October 14, 2024 • 48 mins
What if the key to saving countless women's lives is understanding their monthly cycles? Join us for an eye-opening conversation on the Hope Podcast with Dr. Bivin Von Almen, an esteemed obstetrician with over 30 years of experience. From his journey through the medical landscapes of Texas and Louisiana to his impactful work at Charity Hospital, Dr. Von Almen brings invaluable insights into the often misunderstood world of women with bleeding disorders. We unpack the stark reality of these conditions, like von Willebrands disease, which often go undiagnosed, leaving many women to suffer in silence.
Imagine the anguish of undergoing unnecessary hysterectomies or enduring severe health issues simply because of a lack of awareness. Our conversation takes a deep dive into the barriers these women face, particularly in rural healthcare settings, and highlights the crucial role of family history in diagnosis. Dr. Von Almen passionately discusses the importance of education among obstetricians and the life-saving potential of pre-treatment with factor therapy. Stories of patient persistence and self-advocacy are powerful reminders of the need for informed and proactive healthcare management.
Dr. Von Almen also shares his heartfelt reasons for joining Hope and his dedication to addressing the underappreciation and mistreatment of women, especially those facing racial disparities. We explore Hope's mission to empower patients with knowledge and advocate for better healthcare outcomes. By connecting with Hope and tapping into resources at hope-charities.org, you can join this vital movement and make a difference in your health journey. Don't miss this compelling episode that educates and inspires action and change.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jonathan James (00:04):
Welcome to the Hope Podcast.
My name is Jonathan James andI'll be your host today.
It is really fantastic to behere to talk about Hope Unmuted
and in this podcast we're doinga series on women with bleeding
disorders, and I'm reallyexcited to invite one of my good
friends and one of our board ofdirectors, biven Von Allman.
Thank you so much for beinghere with me today on the Hope
(00:25):
Podcast.
Very welcome, happy to be here.
Yeah, it's great to see you, asalways, and I should say, dr
Biven Von Allman, I apologize,but you are a physician and have
been practicing as anobstetrician, for I won't say
you're old, but a long time 30years, 30 plus years, yeah, and
(00:46):
so really excited to talk abouttoday, specifically about women
with bleeding disorders and alittle issues about that.
But I think there's a lot ofeducation that needs to happen
and things that we're learningand we're just trying to move
the needle on.
How do we advance in that space, especially for women living
with von Willebrand's and maybeeven other bleeding disorders
that just don't know that theyshould be looking into these
(01:07):
things.
So I'm super excited to diveinto that topic, but I just want
to take a few minutes forpeople to get to know you a
little bit better, because it'sjust you have such an incredible
background and story and sotell us a little bit about where
you're from and also just kindof your journey of becoming a
physician and getting involvedin the practice that you're in.
Dr/ Bivin Von Almen (01:26):
I was originally born in Texas and
raised in five other states,ended up here in Louisiana.
I went to LSU Medical School.
Let's see that was many yearsago, 1983 to 1988.
I went through residency atCharity Hospital and all the
charity hospitals from 1980.
(01:48):
Oh sorry, 19.
What years did.
Jonathan James (01:52):
I say so sorry yeah 1988 to 1992.
Dr/ Bivin Von Almen (01:57):
And then I started in private practice and
I did obstetrics and gynecologyfor about 13 years and then I've
been doing GYN surgery for thelast 30 plus years and then
retired Wow, so yeah.
Jonathan James (02:09):
Well, I, you know, one of the things that I'm
always inspired by is yourpassion and your empathy.
I think a lot of times, um sooften, I know, for me I've had,
I have been a person that hashad white coat syndrome on more
than one occasion where I walkin and I just don't know.
You know, I get all high bloodpressure and everything else,
and so sometimes that's a resultof you know, sometimes you have
(02:31):
expert physicians that aremaybe don't have always the best
bedside manner, but you are notthat person.
You're the extreme opposite ofthat, and we have many friends
that you've helped through theyears and, of course, you've
helped my family as well, andand I've just, I've just always
been so blown away at how muchempathy and willingness to
listen and really hear what theneeds are.
(02:52):
I know, when I got to know you,you were still working at a uh,
a hospital that was a nonprofithospital and, um, one of the
reasons why you went there isbecause you just cared for
people so much.
You couldn't make a lot moremoney at a lot of other places.
But you wanted to really helpthe people that couldn't get
help any other way.
And tell me a little bit aboutyour tenure there.
I know that that was a passionfor you, but you worked on
people that really had noinsurance, they had no ability
(03:14):
to pay, they had no, no ability.
You, you really served theleast of these really in many
ways, right.
Dr/ Bivin Von Almen (03:19):
Yes.
Well, a lot of them basicallyfell through the cracks, either
medically, socially,economically, and always had
bigger problems than they reallywould like to admit to Just
learn to deal with it from theperspective of bleeding to a
(03:40):
point of anemia that needed tobe transfused, sometimes four or
five times a year, and reallyneeded.
They needed help and the wholepurpose was to try to help them
out.
I mean, that's why we're inmedicine to begin with.
Right Is to help other people.
It's not about us.
Jonathan James (04:19):
So there's a main reason In those types of
settings and I've been in someof those hospitals and they are
really not easy to work in it'slack of resources, lack of staff
, lack of medicine, sometimeslack of all kinds of things, and
so you see, lack in everydirection and to work in that
environment.
How many years were you there?
You were 20, over 20 years.
(04:39):
Yeah, yeah, 20 years.
And so to work in that kind ofenvironment for that long is
almost like staying in aperpetual sense of residency
almost in a way, I would expect,because you're just Similar.
Yeah, you're just working in aspace that just doesn't have all
the latest, greatest technology.
Dr/ Bivin Von Almen (04:55):
Bells and whistles are out there.
Jonathan James (04:56):
Yeah, you don't have a coag lab that you can run
down and throw into acentrifuge and get an answer
right away.
You have to wait for everythingand that's tough a centrifuge
and get an answer right away.
You have to wait for everythingand that's tough.
But I know that you knowworking with specifically with
women with bleeding disorders.
One of the things we'relearning is that we hear stories
of so many people that are, youknow, I mean, sort of a driving
(05:24):
portion of that womenspecifically with bleeding
disorders is their menstrualcycle.
Is can sometimes be one of thefirst indications that there may
be something wrong, that theydidn't get detected, maybe in
some other form or fashion.
If you didn't have a, if youdidn't have, like, a family
history in a genetic sense, oryou weren't aware of it because
someone else had gottendiagnosed in your genetic line,
you you may not have anawareness.
And one of the things we talkabout a lot we just, you know,
(05:49):
have been doing some educationfor von Willebrand specifically.
One of the things we learnedabout is the CDC reports.
They estimate of almost nearly3 million people in the United
States could have vonWillebrand's disease, but only
roughly 33,000 of those peopleare even identified.
I mean, they don't even knowwhere the gross majority of
those.
So that tells me that there's ahuge gap of information that
(06:09):
hasn't been.
You know of people that reallyneed to see where these problems
are, so one of the things Iwanted to kind of ask you and I
and I think about a lot of timesas an OB is you know what is a
normal menstrual cycle timeframe, cause I, I think we've seen
some women that have hadtimeframes all over the map, and
and so you know a lot of one ofthe first questions that comes
(06:30):
up is do you have longer thannormal?
menstrual cycles yes, Well, Ithink most women are going like
well, I don't know, I just it'smy cycle you know like they
don't really put that two andtwo together, but since that's
such an important, maybeanecdotal way for the average
everyday person or female to beable to kind of indicate what is
(06:51):
a normal time.
Dr/ Bivin Von Almen (06:51):
Sure, three days to seven days.
Anything after seven is reallyconsidered abnormal.
Okay, some women have beenhaving cycles for 10 days and
two weeks and just been puttingup with it and thought that was
normal.
Wow yeah, anything that is inintermenstrual bleeding between
cycles is abnormal and should beinvestigated.
(07:12):
Anything that is heavier thanthey say five tablespoons, which
is roughly 80 milliliters ofblood in a cycle.
Now, most women aren't going tomeasure 80 milliliters of blood
, so they feel that if you'reusing a pad or a tampon every
hour or you're having to useoverprotection, that's certainly
(07:35):
excessive bleeding.
And some of those things don'tget investigated from the
perspective of bleedingdisorders because, being an
OBGYN, one of the first thingswe investigate is the actual
organ that's bleeding the uterus.
Or we investigate the hormones,or we investigate the ovaries,
or we investigate the lining ofthe uterus.
And I was just looking at adifferential diagnosis for
(07:57):
abnormal bleeding and bleedingdisorders is a tenth down the
line of a number of 11 or 12 inthe differential diagnosis, so
it's way down the line.
Jonathan James (08:08):
So meaning that a doctor would probably, if
there was abnormal bleeding, say, beyond that seven days or
beyond that pad per hour,whatever that measurement is
we're thinking about, if that'ssomething that's outside of the
norms, they would look at thoseother eight checkpoints before
they would Correct.
And you said bleeding disordersare eight or nine, Eight or
nine.
Down the line forms they wouldlook at those other eight
checkpoints before they wouldCorrect.
And you said bleeding disordersare eight or nine.
Eight or nine?
Dr/ Bivin Von Almen (08:28):
down the line.
Jonathan James (08:28):
So they're going to go through a checklist in
their own mind as anobstetrician to go and say, well
, is it this, is it that, is itthis?
And they've got to basicallythrough process of elimination,
eliminate eight things beforethey get to a bleeding disorder,
correct?
Dr/ Bivin Von Almen (08:41):
Wow, right, in other words, that's one of
the last things that actuallygets looked at, and sometimes
it's already to a point whereit's it's too late for them to
actually be treatable if they'vealready had an obstetric
emergency and possibly had apostpartum hemorrhage or a
surgical emergency and possiblyhemorrhaged post-operatively or
(09:03):
on the table.
Jonathan James (09:05):
I had a treatment center nurse many
years ago who is retired and notwith us anymore.
Actually, she passed away a fewyears ago, but she actually
told me one time she said,jonathan, because if we ever had
realized how many people thathad extended you know, abnormal
bleeding as women.
What we're finding is that wehad potentially thousands of
(09:29):
them that had hysterectomiesbefore they were of childbearing
years because they had bleedingchallenges.
And if we would have just knownthat we could have given them a
little bit of factor or alittle bit of fungal-lipidinase
protein or a little bit oftreatment, a little bit of von
Willebrand's protein or a littlebit of treatment, they could
have had a full life with all oftheir faculties.
Dr/ Bivin Von Almen (09:54):
The education is way behind the
process of treatment, which isamazing in 2024 to see the fact
that we still are there.
Jonathan James (09:58):
We really haven't advanced a lot.
Dr/ Bivin Von Almen (10:01):
Correct, which is where knowledge is
empowering to these people.
Yes, because if they don't haveand a lot of people a thorough
history includes a familyhistory A lot of people don't
have an idea of their familyhistory, maybe because of social
situations or maybe becausethey were adopted.
But most of the times, if wemake a diagnosis and somebody
(10:24):
has a real, strong familyhistory, it points you right to
that disorder and the need fortreatment.
That doesn't happen themajority of the time.
Jonathan James (10:33):
Even shame, right?
I mean, sometimes thelimitation is that even within
the family unit, it's seen assomething not to talk about, so
they just don't want to correct.
Seen as something not to talkabout, so they just don't want
to correct.
That's amazing, correct and sothis.
This is part of the reason whyI know, as as a person in
advocating for people withbleeding disorders, this is
(10:53):
something that makes me reallyfeel like man.
We got to get the word outbecause if more people knew that
anything over seven days,anything over a pad, an hour,
anything like that, maybe theywould start to ask questions.
Because if that doctor has togo through eight different
things before he's going toinvestigate that, but if the
patient comes to you and says,hey, I'm suspicious because of
(11:14):
these reasons as a treatingphysician, would that make you
want to maybe look into thatmore?
Dr/ Bivin Von Almen (11:21):
Absolutely I would.
I would um rule out the numberone through six things as
quickly as possible and thenmove on if there was not an
abnormality.
You mentioned the word shame.
Not only shame, but it's alsofear, for some people Fear that
they might find something wayworse than just a bleeding
disorder.
They may not know about thebleeding disorder, they may
(11:41):
think cancer and they may notwant to come until it's to a
point where they've had toreceive a transfusion.
I mean, if you see somebodythat's been in the hospital and
had to receive transfusion two,three times in a period of five,
six years, that should be a redlight.
That should go on.
Now, the other issue is thatyou know making the referrals to
(12:02):
the doctors and sometimes thoseare pretty long waits to
hematologists, oncologists, andthey don't want to wait that
long or they won't wait thatlong or maybe it's even in
another city.
Jonathan James (12:11):
That's really really uh, too hard for some of
my patients to be able to get to, absolutely, absolutely it's
very interesting I reallythought about those hurdles
being things that we have to,yes, consider when we're trying
to encourage people to providesolutions.
One of the there's so much oh mygosh, we could probably talk
for hours about just ruralhealth, because so much of what
(12:33):
work you've done in your careerhas been sort of targeting,
bringing resources to people inrural settings, and, and that's
such a huge need.
But I don't think we canunderestimate how much just that
travel, even even 30 minutes anhour away, much less wait times
to get into a specialist allthose things create hurdles.
So one of the things that Ithink is also important is that,
(12:54):
and one of the things I'm sograteful for you, um, getting
involved with hope and being apart of our board of directors,
and we'll we'll dive into someof that in a little bit too, but
I I wanted to, you know, justsay that one of the things I'm
so grateful for is that I dobelieve that more education
could be provided toobstetricians as a whole that
are practicing in many differentcommunities.
Maybe, maybe there's a way wecan continue to expand there too
(13:17):
.
But you know in in yourexperience, and I think about
you doing so much on thesurgical side were there ever
times that you were doingsurgery on somebody, that you
had accessibility and you sawand observed concerns of maybe
bleeding, that you thought, man,maybe I should look into this.
Dr/ Bivin Von Almen (13:33):
And then you did look into it and found
out it was von Willebrand's orit was some other kind of
bleeding problem, Absolutely,there were several times I never
had the ability to be able tofollow up with these patients,
mainly because they wouldn'tcome back, I mean they would not
go on.
I actually had a lady that camein and gave me a family history
(13:56):
before she actually had surgery.
Thank goodness, because shetold stories of her mother and
the scenario that happened withher in the operating room and
she almost didn't make it Wow.
And so we were able to give herfactor before we did the
surgery to help Right, andyou're well aware of that.
With bleeding disorders, youknow a factor.
I mean a lot of people thinkhemophilia.
There's no way they're nevergoing to have any, any operation
(14:16):
because they don't know aboutthe factors, they don't know
about the ability to pre-treatand to be able to make it a
safer environment for them tohave surgery Right.
And that happened a lot yearsago when I was in training and
right out of training.
Jonathan James (14:29):
Wow, well, truly , I mean, with the way you know
product and availability and allof these things, with the right
information, bleeding disordersis a problem that can be
resolved.
It's something that can besolved, it's not something that
is so.
I mean, I think that there's afear with.
I mean, 30 years ago, 40 yearsago, there really was such a
(14:52):
very, not just a lack ofknowledge, but there was also a
lack of availability ofmedication to be able to address
these issues.
Now we thankfully in the worldtoday, especially in first world
countries, we pretty much haveaccessibility if we can know
about these things ahead of time.
And so now the biggestchallenge is actually that
knowledge gap.
It's actually about helpingpeople understand, and you know,
(15:14):
especially Von Willebrand isone of those things where it's
50-50.
Some are men, some are women.
It's not like in hemophilia,for instance.
We experienced that, as I havesevere hemophilia.
Historically that wasconsidered just a male dominant
disease.
Dr/ Bivin Von Almen (15:29):
We're learning now that's not true
either.
Jonathan James (15:31):
And so so we're trying to understand and, as
we're learning, I think it'simportant that we get this
information out to so manypeople because, really, I think
the patients in many ways arethe people who might be
suspicious that these are thingsthat they might have trouble
with.
If, if you empower yourself withinformation, going to your
treatment plan with yourphysician to say, hey, these are
(15:54):
things I'm concerned about itcould like you said, that lady
that came to you ahead of timeit could actually provide you
the information you need to todo some investigation in that
direction.
And I think, as an OB, like we,we think very often in in
hemophilia it's like, well, youjust got to go to the treatment
center and you got to go see ahematologist, but, but a lot of
times the wait lists are verylong.
They're also very, in veryspecific places that can be
(16:16):
difficult to get to, and maybethe OB is the place where you
might be the most common placeto discover that, especially for
women.
And, uh, I just think that if,if we get the message out to
patients this is an area that ifthey, if they have the, if
you're suspicious, and if you'relistening to this podcast and
you're thinking, man, oh my gosh, like five tablespoons, eight
(16:38):
tablespoons of blood.
Yeah, that's me every month.
Maybe it's worth asking somequestions, Absolutely.
Dr/ Bivin Von Almen (16:45):
Absolutely.
If there's any doubt, askquestions and if the questions
are receptive, or if thephysician is receptive to your
questions, great, get him topush the ball forward.
If that means a referral, ifthat means doing some blood
tests, if they can do it, youhave to try to make that
available.
Yeah, if they can do it, youhave to try to make that
available.
Now, a lot of people will howshould I say this If they don't
(17:08):
know about the actual diseaseprocess, kind of stray away from
it because fear that they don'tknow anything about it and it's
not treatable for them, it'snot something that they can
treat.
And years ago, I mean when Ifirst was training, I mean
hemophilia was.
I mean basically people thought, well, that's just pretty much
a death sentence.
You know they're going to bleedto death if you don't, if they
(17:31):
have a problem, and that's stillI mean I hate to say this in
some social areas probably stillthought of as the same way
Interesting yeah.
Jonathan James (17:41):
Which is totally false.
Absolutely, but we don't, butthey know no better.
Interesting, which is totallyfalse, absolutely.
But we don't, but they know nobetter.
But they know no better, right,in medical school, I mean, you
know, correct me if I'm wrong,but I understand.
It's like you're going to be.
A very small portion of yourtraining is even going to
explain a definition of thesethings, right?
Dr/ Bivin Von Almen (17:59):
Right, correct, and unless you
specialize specifically inhematology, hematology, oncology
, you're not going to get thetraining in that.
Because even if you do internalmedicine, there's so many other
things that they have to knowabout.
I mean, they're going to know alittle bit about it.
They may know more about itthan, say, a pediatrician, they
(18:20):
may know more about it than ageneral surgeon, but
realistically we don'tspecialize specifically in
learning about that until it'ssomething that we have to deal
with.
Jonathan James (18:30):
Yeah, which is hard.
That's so interesting.
At what point do you thinksomebody might need to reach out
to a treatment center, wouldthey?
Would they go to their OB firstand ask that question and then
their OB refer them to?
Should they go to the treatmentcenter right away?
What do you think is the bestthing?
Because if they go to somebodywho's not educated on that issue
(18:52):
, I guess my concern and whatwe've seen happen sometimes is
sometimes that's just brushedoff and kind of almost dismissed
, because everybody doesn't havethe luxury of being in
relationship with somebody asamazing as you, that you're
going to take that informationto heart, you're going to
investigate, you're going to you, but not every physician is
(19:13):
like that, and so I guess thequestion is like, if there's a
dismissal there, should theystill keep pushing and maybe
look for somebody in hematology,or should they wait on their
obstetrician to make that?
Should they go to the PCP?
I don't know.
Dr/ Bivin Von Almen (19:25):
You know what do you recommend?
I would say that they need toget a second opinion from
another if it's a primary careprovider, if it's a family
practitioner or if it's ahematologist.
That kind of dismissed them andthey never did any testing on
it.
If you get to that point andsecond or third opinions, you're
not getting anywhere.
If the treatment center is theplace where they can get
(19:47):
evaluated, that would be theplace to go.
That's what I'd recommend.
I didn't even know abouthemophilia treatment centers
when I was trained.
Jonathan James (19:54):
And you were ordering medications in some
occasions for surgeries, evenfor these types of issues,
absolutely, but you didn't evenknow to refer to that.
No, yeah, and that's right hereno education, yeah, but you
didn't even know to refer tothat.
No, yeah, and that's right here.
No education for that?
That's amazing.
Well, there's so much more workto do.
I do feel like and I'd becurious to know your thoughts on
this how important is thepatient themselves, how
(20:18):
important is their determinationto find answers to getting an
actual solution?
Dr/ Bivin Von Almen (20:28):
Very If they continue to have the
problem, it continues to be asituation that is
inconveniencing them.
It's very important for them topush that ball forward, so good
yeah, and they may run upagainst egos or run up against
people that don't want to doanything about it.
(20:49):
Continue to seek out somebodywho cares.
Jonathan James (20:53):
That's good.
I heard you say one time in oneof our conferences you said you
know?
I said if you don't get whatyou need in a first opinion, get
a second opinion.
If you don't get a secondopinion, get a third, fourth,
fifth, sixth, seventh opinion.
Dr/ Bivin Von Almen (21:04):
If that's what it takes, yeah.
Jonathan James (21:05):
Right, I love that because it's so, and I, you
know, as a person living with ableeding sore on my end, I have
been in those situations whereI felt like I wasn't being heard
.
I felt like I wasn't beinglistened to.
How being listened to?
How does somebody stay inspiredto keep?
(21:25):
Because I feel like thatthere's a fine line.
We talk about this a lot inadvocacy is.
I think that there's a fine linebetween being um, an activist
and and and an advocate.
I think that you can almostlean into when you feel like
you're not being heard.
You can almost lean into aplace of being adversarial and
that's not, that's not going toproduce anything either, no, and
so I think there's a fine linein that.
But you know, one of the thingsthat I've wrestled with a lot
(21:49):
is how to inspire people to, tokeep to, to stay inspired and
and to keep asking questions, tostay curious.
You know, right, and and youhad to face that as a physician
too, because you were nottrained to be a hematologist,
correct.
So how did you stay inspired inyour practice, in your career,
to be able to stay, start sayinglet me get curious about things
(22:11):
that I will.
Maybe I wasn't trained in.
Dr/ Bivin Von Almen (22:13):
Right?
Well, many, many of the aspectsof what the patient will come
in with when it's not somethingspecifically in our specialty.
If you're not listening, ifyou're not paying attention,
you're not going to pick it up,and I never forget that.
I was told that if you listento the patient, tell their
history, they'll tell you thediagnosis.
(22:33):
At least 90% of the time,no-transcript.
We all have things going on atwork.
We all have things going on athome.
We all have situations going onoutside of work, right, and if
(22:57):
you're not being listened to asa patient, then you need to go
and find somebody that's goingto listen to you and going to
continue to help you along withthat, trying to make the
diagnosis or find out what theproblem is.
Yeah, if you're not satisfied,that's a good point.
That's a good point.
And it's hard.
(23:19):
You can't be how should I say?
They can't be very negative orpushy bitter.
They just need to try toemphasize the fact that they
would like to really know whythey're having the problem.
Jonathan James (23:25):
Stay focused on the problem, correct Nothing
else.
Don't get distracted by theemotions or the fear, or the
shame or the which can be hard,which can be so hard If you've
been dealing with it for yearsand especially when you're
suffering, because this is not,you know, one of the things that
I think is so important, and Iwould think anybody in the
nonprofit world or you know like, even even in the work that you
(23:46):
did within nonprofit hospitals.
But your whole premise is, yourwhole life is really wrapped
around trying to reduceunnecessary suffering and at the
same time, the rigors ofschedules and and all of that
stuff can put a lot of stress,and the same is true for the
patient.
The patient a lot of times canbe in a situation where they're
(24:06):
they had to take hours off ofwork to even show up to an
appointment and now it's goingto take another 30 minutes for
you to have a discussion or aconversation and sometimes, if
you're not getting feedback, itcan be really, really, really
painful to keep that momentum.
But I just want to encouragepeople who may be listening to
this thinking oh my gosh, likeI've noticed this tendency and
(24:26):
I've noticed this problem, and Ialmost died in childbirth or,
you know, I almost had theseproblems where I had a.
You know, I was very depleted,almost needed a transfusion.
Maybe you should ask questions.
Maybe you should keep askingquestions and not just be
satisfied with that.
Maybe you did have a familyhistory, but there was never a
label for it.
Well, that's okay, Keep askingquestions, because we're all
(24:51):
constantly in a state oflearning.
I think sometimes people I talkto so many people out in the
American public, so much, it'slike well, technology is so good
today and AI is so great and wehave all these answers now it's
like, but we still don't knoweverything.
I mean, in so many ways it'sunfathomable to think that we're
in a state of you know of thisuniverse where we can't, we
(25:12):
really don't know all theanswers, but we really don't.
There's still so many thingsthat are unknown yet right?
Dr/ Bivin Von Almen (25:18):
Yes, I mean , you said 3 million people with
von Willebrand.
Jonathan James (25:22):
Right.
Dr/ Bivin Von Almen (25:22):
Only 33,000 diagnosed Right.
What percentage of those peoplethat have it don't know Right
and their family doesn't knowthat they have it Right.
And people that are even closeto the bleeding disorder
community find out.
Oh, after I finally startedlearning about bleeding
disorders, somebody in my familyactually had this, so their
(25:43):
eyes are open to it and it'sjust not something that we pay
that much attention to, andespecially in the medical
profession.
Unless you deal specificallywith the bleeding disorder
community, it's not one of thetop priorities on the list, like
I said that differentialdiagnosis is way down there On
metarrhagia, the heavy bleedingor the long prolonged periods.
(26:05):
I think it's eight or nine onthe differential diagnosis.
On metarrhagia, the heavyperiods, it's nine or 10 on the
differential diagnosis out of 11to 12 diagnoses.
Almost at the bottom yes, wow.
Before it's even checked off thelist to look into or
investigate Wow, that it's evenchecked off the list to look
into or investigate, correct Wow.
That's amazing.
And there's so many thingshappening, whether it's
postpartum hemorrhage, whetherit's postpartum hemorrhage to
(26:28):
death, whether it isintraventricular hemorrhage on a
baby that's born vaginally andthe mom was never diagnosed with
any type of bleeding disorder,and yet the child, a male child,
comes out with hemophilia.
Right, that could have beenprevented, right, you know
post-operative hemorrhage, right, or not making her off the
(26:48):
table from surgery.
Jonathan James (26:50):
Right, I would argue that this obviously
because of the gap again goingback to those CDC numbers 30,000
that are diagnosed.
Dr/ Bivin Von Almen (26:57):
Three million.
Jonathan James (26:58):
Three million that are you 3 million that are
anticipated?
I think, because of that gap,it's very logical to me to
assume that we have some, thatthere's many, I mean, according
to those numbers, there'smillions of people in the United
States living with this problemthat literally don't know, and
so it's worthy of us to do thisNow.
(27:19):
For women in this case,obviously, the menstrual cycle
is happening every month, andthat could be an indication.
But in some cases, what if youhave other comorbidities, like,
say, for instance, you have, uh,you're not having normal cycles
at all?
I mean, for instance, I havetwo daughters both both are you
know, of the age where they'rehaving their menstrual cycles,
(27:40):
and they had other issues, likePCOS, that prevented them from
having cycles for a period oftime.
And so that was the firstquestion that was asked.
Well, when they said, well, Ihaven't had a cycle in three
months, or something like that,well, oh, well, then you don't
have a bleeding disorder, whichlater we found out was not true,
they actually both had ableeding disorder, and so I
(28:03):
think it's easy to talk aboutthe cycle as being a potential
problem, but you could have thatsame person that could be in
childbirth.
You brought this up and that'swhere it raises its ugly head,
is in the middle of a trauma,correct, right, correct.
And so what do you do?
I mean, if the doctor's notexpecting it, if the staff is
not expecting it, if you're notin a hospital that knows how to
look for that and you don't haveenough?
I mean, there's far more peopleat risk of this.
(28:26):
I think that's why we havepotentially millions of people
that are at risk for this thatjust haven't heard, they just
don't know.
Dr/ Bivin Von Almen (28:31):
We've just talked about von Willebrand's.
What about hemophilia?
I mean, when I was goingthrough residency, it's only
males that have hemophilia, thathave bleeding disorders.
Now we know that there'sfemales, that's right.
So I mean, when you get to thatpoint where it's an obstetric
emergency or a postoperativeemergency, that's when the fire
drill starts, that's right.
Even if the fire is put out,that doesn't mean that you
(28:53):
shouldn't continue to work upthe patient.
That should be a red flag rightthere, right?
But unfortunately that doesn'thappen all the time.
Right?
And if the patient is in thatsituation, they have to continue
to inquire.
Jonathan James (29:04):
Yeah, the patient's got to be in the
driver's seat.
Absolutely, they have to be theone to put the pressure on and
ask questions from everydirection.
It can't just be, you know, Ithink that there's a tendency
for all of us to want to.
You know, um, I know, I know.
Part of the white coat syndrome, for instance, is something
where you're fearful when you gointo a doctor because you
haven't been trained in medicineas a novice.
(29:27):
I'm going in and I wasn'ttrained to be a doctor, so I
don't know.
There's a lot I don't know.
You know, at the cellular level, I could not tell you how an
enzyme interacts with a protein,ends up with a.
I don't know.
You know what is a genecompared to a red blood cell?
I, you know what is a genecompared to a red blood cell?
I, you know, sure, you know.
But the point is is that wedon't really, you know, while,
while, while I think it's easyfor us to focus and say we're
(29:50):
not the experts, that individualperson is still living with
their own flesh and blood, theirown body, I mean a lot longer
than any researcher will be ableto see that any investigator,
any doctor, any treatingphysician, and that's not a
knock on the profession.
That's just to say that you mayhave things that you notice
(30:11):
within your own life that raisetheir head at variable times,
like, for instance, my daughter.
One time when she was verylittle, she fell and she hit her
lip on the stairs and it bustedher lip.
Well, don't you know thedoggone thing like bled for like
three days and we couldn't getit to stop and we even asked the
question is this, possibly this?
(30:31):
At the time, the predominantthinking was not that cause
girls can't have it.
But it wasn't because weweren't asking questions, but we
didn't continue to keep thepressure on.
And so a decade goes by,there's other problems and now
she has some joint damage as aresult of not asking those right
questions.
And I can't blame myselfentirely to say that it's 100.
(30:52):
I can't walk around with theshame of that and guilt of that.
I've got to be careful tomanage that emotion in my own
heart.
But at the same time I reallycan't blame the medical
physicians that we're looking atat the time, either because
they didn't have the information.
But it's incumbent upon me asthe parent or as the person
living with that I've got tostill keep asking questions if I
(31:12):
see these trends, because I'mlooking over decades of my own
personal life and I don't thinkwe should downplay that as a
non-physician.
Dr/ Bivin Von Almen (31:25):
Issue Issue Right, and you live with
yourself every day.
Right, the doctor sees you onceevery year, once every six
months.
Right, if it's an OBGYN, theymay see them once during their
pregnancy.
See them once a year after thenfor pap smears or annual exams
Right, for maybe five, ten years.
Right, if it's a really longtime, it could be 20.
Well, by then you should havean idea.
(31:46):
But Well, by then you shouldhave an idea.
But then you have to rememberthis also, jonathan the things
that you've gone through withhemophilia bring a tremendous
amount of pains, burdens,battles that you have to deal
with, and sometimes it's hardfor the patient to remain
focused, to ask the rightquestions over and over and over
again because of what's goingon in their life.
So that's really hard.
Jonathan James (32:10):
That is hard, which is why we need
organizations like Hope to helpencourage, and that's one of the
things I love about what we dois we, we try to do.
Moments like this, we try to doeducational opportunities.
We try to help empower peoplebecause, at the end of the day,
like it is a long, it's alifelong road.
It's not just a long road, it'sa lifelong road and it's one
that really does.
There's lots of ebbs and flowsand there's lots of things that
(32:33):
occur over the over decades anddecades of a lifetime and and
very likely you're going to gettired You're going to need some
encouragement that you've beensuch a huge, really answer to
prayer for me personally asbeing a part of our team,
because when you came onto theboard of directors, we were just
(32:54):
starting to really step outinto how can we really educate
people on this issue of howwomen are impacted and try to
really make some strategicchange in that area.
Tell me a little bit about,like, what drew you to hope,
what made you want to getinvolved with hope and and and.
What is it that you're excitedabout as you look into the
(33:16):
future, of what we could do as a, as a group and as a team?
Dr/ Bivin Von Almen (33:19):
The heart of hope is really what drew me
in.
I'm just so humbled to be partof it, be on the board, because
when I first initially wasapproached about it, it was like
I didn't have time to do that.
I was busy with other thingsgoing on in life.
Then, when I realized what theheart of hope was, it's I don't
have time not to do that.
Y'all are here strictly for thepatient.
(33:41):
You're here to help people incrisis.
You're here to help people inneed.
You're here to educate people.
I would say at this point intime, you're probably pushing
the ball forward more withwomen's health than any other
organization that I know of.
From the perspective ofbleeding disorders, that's like
(34:04):
number one in my eyes, becausethat's what I take care of.
Women are awful, awful, a lothow should I say this?
Underappreciated and nottreated with the same especially
racially, some women and nottreated with the same respect
and the same amount of interestthat some other people are
(34:28):
treated with.
So I took care of an awful lotof those women and just to have
them come in and feel likesomebody was caring about what
was going on in their life,somebody was listening, somebody
wanted to help them.
That's what you guys do all thetime, a hundred percent.
And that's what drew me in.
And then, when I said, okay, Igive, I'm going to be a member,
(34:51):
I sat in here and I thought, whyam I even here?
Why did they even ask me?
I'm not even qualified to dothis.
Oh my gosh.
Jonathan James (34:59):
But then I realized no, I wasn't qualified.
Dr/ Bivin Von Almen (35:01):
I was called to do this, wow.
And as I was called to do this,then he's going to give me the
qualifications that I need.
That's so good, so that was thebeauty of it.
And then I just see the justexpansion of the people that
y'all are reaching.
Yeah, and it's not because youwant it to be about you, you
want it to be about hope, youwant it to be about the people.
(35:23):
That's right.
That's right.
Jonathan James (35:26):
That's why we're all here is for others.
That's so good.
Bevan, oh my gosh, I yeah, Ican't even begin to say how
grateful I am for yourinvolvement, because it it's not
just a project for us.
I and I think that that'swhat's important for people to
understand is that it's not welive this number one.
(35:46):
I mean I live it personally.
You've seen so many of thepeople that we you know, so many
of our employees, so many ofthe people that are involved, so
many of our volunteers.
I mean it's like it affects usat every, the fabric of who we
are, not just resources and andexpanding, you know, the
(36:11):
possibilities of treatment andall of those things, and really,
truly advocacy work for womenwith bleeding disorders is it's
not like a trendy thing.
We're trying to pick up and Ithink that that's something
that's unless you're involvedreally deeply, you probably
don't know that, because some ofthese things can feel like
they're a little bit a littlebit like oh, everybody's talking
about, let's just talk about it.
You know, and I would say thatthere's a lot of folks out there
(36:31):
in the bleeding sort ofcommunity that really are doing
a lot, rolling up their sleeves,committing to trying to make
change, committing, trying toimprove, which is so
heartwarming it really is, andso, but for hope, it's not
something for us that we're justtrying to like, adopt as like
just an extra thing that we'redoing to us.
This is central to what we doand, uh, we're here for the
(36:53):
disenfranchised entirely.
We're here for the people thatdon't.
We want to meet unmet needs.
We're not trying to duplicatewhat everybody else has done.
We're not trying to just jumpon a bandwagon.
Even this is something foryears upon years that we
continue to layer upon layer aswe learn.
We want to pass thatinformation along.
You said earlier, knowledge ispower, like that I mean truer
words, right, we never spoke, Imean it's.
(37:14):
It really can be empoweringwhen you have the knowledge.
And my hope is is that peoplelisten to a conversation like
this or they look at otherresources and they think about
okay, maybe, maybe I can get thecourage up to ask my OB like am
I maybe above average?
Am I bleeding more than normal?
And I hope that one day in timeI will be able to look back and
(37:38):
say, oh my gosh, now we have 2million people that are
diagnosed, not because I want tosee just everybody have a
bleeding disorder.
It's kind of like pointing toministry of insurance.
You know, you just, you don'treally necessarily wish it on
anyone, but at the same time,it's like that knowledge gap has
got to close, and I think itstarts with the patient
community.
At this point, in an idealworld, I'd love for everybody in
(38:01):
every medical school to beeducated up to the hilt on these
things.
But you know what?
There's thousands of rarediseases I talked about.
You've heard me say this at alot of our conferences, but it's
like it's still amazing to meto think that there was, like
what?
7,000 rare diseases diagnosed.
A very good situation in thesense that we have a lot of
resources that maybe othercommunities don't.
So we hope to help with this.
(38:37):
We hope to help with even otherrare and ultra rare diseases
that don't have any resources orsupport.
But I want people to know thatwhat we're hoping to do is
really commit to this for thelong haul.
It's not just a project.
Long haul and not just.
It's not just a project.
Dr/ Bivin Von Almen (38:54):
It's not just a trendy thing.
It's something that's centralto who we are.
That's another thing about theheart of hope.
It's out to help those whocan't help themselves, and
you're always looking forsomebody else to help, which is
just the amazing thing to me,which is so humbling to me.
I look at y'all, especially someof the people that I know have
hemophilia and are gettingtreatment, and I think to myself
(39:14):
and they go on every day andcontinue and don't gripe about
it, don't moan about it, andlook at our lives, those people
who aren't affected, and yetwe're going to complain about
something or grumble aboutsomething, and I'm thinking we
have it so good compared toy'all, and y'all are just going
on and on.
And I think to myself, after 34years of doing what I've done,
(39:39):
all the possible treatments thatwe've had, whether it's
hormones, whether it's surgery,whether it's aggressive surgery,
and people are still havingthese problems.
We're not curing them.
We're not taking care of theroot issue.
We're just taking care of thesymptoms.
We need to get to the rootissue, to the deeper root of
what's going on, to actuallytake care of the patient
(40:00):
themselves.
Because, even if they've hadbleeding issues and you've taken
care of their bleeding problemsfrom the perspective of some
hormonal treatment, or theybreak through and then you've
had to do surgery minor surgery,and then you've had to do major
surgery.
What happens after the surgeryis over?
Are they going to havesomething else going on if they
truly have an underlying problem?
Jonathan James (40:19):
Yes, they will.
Dr/ Bivin Von Almen (40:20):
Did we really take care of the root of
the problem?
Jonathan James (40:23):
No, that's what we need to get to, which is why
it's incumbent upon the patientpopulation to continue to ask
the questions Because, honestly,it's a point of diminishing
returns.
You can't expect every singledoctor you encounter to be the
most expert at every singlething.
I don't go to my cardiologistto see how well my hemophilia is
(40:45):
doing.
Dr/ Bivin Von Almen (40:51):
There's just too much information that
we all know.
Jonathan James (40:53):
There's no, possibly every person, every
specialist can know everything,and so, um, you know, I do think
it's incumbent upon us to toeducate ourselves.
What to that end?
What?
What do you think people shoulddo if they want to educate
themselves?
If they, if they're suspiciousof these things being
potentially probably, forinstance, men that have von
(41:15):
willebrand's disease, it's avery common symptom that they
would have excessive nosebleeds.
That might be seasonal.
They might be seasonal, butthey, they bleed more than
normal from a nosebleed.
Sometimes people have bleedingin their gums and their teeth.
They have, they have bruising.
That occurs, they just don'tUnusual bruising right.
It feels like it's more commonthan it would be maybe their
(41:37):
friends, Right?
What would you do to encouragemaybe a guy or a girl who might
suspect that there's somethinggoing on here that might be
different?
How would you encourage them toget to the education?
Because I think that that'sthat's still a question mark out
there.
I mean, we're trying to do whatwe can with maybe online stuff,
but what do?
Dr/ Bivin Von Almen (41:54):
they do.
Well, I mean, as we all know,the internet's right there at
our fingertips.
I mean people go to that allthe time Search out somebody
that has a problem or has theproblem, or a organization that
deals with those specific typeof problems, and one like Hope.
They're more than willing tohelp the patient and educate the
(42:15):
patient and give theminformation and direct them in
the right direction.
That's right, which is anothersuper positive thing about the
heart of Hope yeah, you'realways willing to help people
out.
Yeah, in more ways than justthe ones that are in crisis,
people that are inquiring.
That's so true.
That's what this is all about.
Jonathan James (42:32):
That's so true.
We were talking about thisearlier about how we have a
staff member here who came towork and really they came with a
deep amount of professionalbackground and all kinds of
things and they got here andthey started to get.
They had known that some oftheir family members might, if
they ever had to have a surgeryor some kind of extreme thing
(42:54):
happened, they might needsomething, and they weren't.
They didn't know what it was,and then they started to learn
through some of our onlinethings and they were like wait a
minute.
They went back to their familymembers and said, what do you
have again?
And one of them knew and one ofthem didn't know.
And and one of them didn't knowand one of them started to.
Well, it turns out she's afemale that has Von Willebrands
(43:14):
and she just had to have adouble knee replacement and
she's only in her late forties,early fifties and you know
there's a suspicion that maybeif she had had treatment for him
.
Well, this employee startedhanding them the information he
was learning and he's like, ohmy gosh, like how, why didn't we
know all this before?
(43:35):
But it took him working, youknow, in the environment to even
realize oh my gosh like, andthat's the piece that I hope to
solve someday.
Like I, you know, as anorganization, one of the things
that we've had a passion for,obviously, is serving the people
that know what the problem is,but I never actually, you know,
I've now been, you know, workingas an employee of Hope.
(43:56):
I mean, my wife and I startedthe organization 15 years ago,
but as an employee, I've beenhere for 11 years, I think we
just said and so in thattimeframe, I never imagined that
we would be doing campaigns andtrying to reach out to maybe
mass population, not just thesesmall niche communities, and it
(44:18):
is amazing to think about thefuture of what we could be doing
.
We need an army of people toget educated so that we can
infiltrate every community.
We can infiltrate every, andthe internet's a good place to
start.
People can join an onlineeducational session and listen
in.
We just did this VonWillebrand's conference.
We're planning on doing thatfor every year going forward.
(44:39):
But those online things youcould invite a neighbor, you can
invite a friend, you can invitesomebody that said you know, I
think maybe there's something Iknow about that.
Well, maybe invite them.
You know, I think maybe there'ssomething I know about that.
Well, maybe invite them.
You know, get involved.
You know we have our hopeconference coming up in the fall
super exciting.
We have a few scholarships thatpeople can get to travel.
But even if we can't, you canaccess that same conference
(45:01):
online.
Maybe they can come and listento some of those sessions to
understand, to get some of thelanguage, to get some of the
learning about, maybe, whatquestions to bring to their
doctor or their clinical setting.
My daughter, my oldest daughter,actually got her first pretty
educated on how this stuff works, and it was genetic.
So we're looking for the samething.
We'd gone to specialists andit's probably not whatever, but
(45:23):
nobody had really drawn bloodwork.
Well, I was able to get my PCP,my family doctor, our primary
care physician, to actually pullthe blood work and they were
like, yeah, sure, we'll pull it.
We can't maybe diagnose itnecessarily or provide treatment
.
We can actually look into it.
Well, sure enough, there was theanswer right there and she's
like, oh, this is definitelywhat that is.
So then we had information totake to the specialist and say,
(45:46):
oh, this is what.
And then it was a differentstory after that.
But I just think that's whatI'm excited about, about what
you and I get to do as as partof this really movement in a way
is to really bring not onlybring people together to learn
and grow and support each other.
That's super huge.
I, I, I you can neverunderestimate how powerful that
(46:06):
is but also the possibilitiesthat there's millions of people
out there that need to hearabout this, that are suffering,
and some of them I think some ofthem are having early mortality
.
Some of them are dying as aresult of this lack of knowledge
.
Dr/ Bivin Von Almen (46:19):
Suffering silently because they've never
actually known about it.
Jonathan James (46:24):
Right, and it's exciting because the needle is
starting to move a little bit.
We just recently got one of themedications for specifically
for vulnerable brains whichtalked a lot about, just got an
indication for preventativetreatment.
That's not been somethingthat's really been on the market
and so that's exciting.
There's some movement there.
We know that there's some newstudies coming out, new
therapies coming out down theline.
(46:44):
It is really exciting to thinkwhat could be solutions in the
future.
But I certainly hope anybodylistening to this podcast today
I hope you've been inspired andenergized and excited about the
possibilities and what you couldlearn and I know we're
preaching to the choir herebecause if you're listening to
this, you obviously are alreadyself-learning, which is great,
but we want you to get involved.
(47:05):
We're real people with anoffice that we take calls every
day, all day, and we want tomake certain that people can
call us and just reach out, pickup the phone.
I mean, you know, if you justcall the main 800 number, you're
going to get somebody that's acaring, thoughtful person that's
going to want to hear yourstory out and listen, and we
might very well have some toolsthat we can send you or empower
you with that can help you tohave some of those important
(47:25):
conversations and so hard ofhope, yeah, so true.
So, biven, thank you so much forfor being invested, because I
know every minute that you spendaway from family and your
career and everything else Iknow is a sacrifice, and and and
I just want to say thank you somuch for being invested with us
as a board member to help guideus down this journey, to learn
(47:47):
how to, how to explore andexpand our reach, but also thank
you for taking the time todayto just invest in this moment my
pleasure.
Thanks for having me.
Well, thank you so much forlistening to this podcast.
I hope it was encouraging toyou.
You can find more resources onhope-charitiesorg and we would
love, love, love for you to getinvolved in one of those events
we talked about.
But also, we're really excitedabout the future of what we can
(48:11):
do together, and so we need youto get invested with what we're
doing here, because there's somuch more to do and we can only
do it with your help.
So, thanks so much forlistening to this podcast.
We hope to see you on the nextone.
Take care.
Welcome to the Hope Podcast.
My name is Jonathan James andI'll be your host today.
It is really fantastic to behere to talk about Hope Unmuted
and in this podcast we're doinga series on women with bleeding
disorders, and I'm reallyexcited to invite one of my good
friends and one of our board ofdirectors, biven Von Allman.
Thank you so much for beinghere with me today on the Hope
(00:25):
Podcast.
Very welcome, happy to be here.
Yeah, it's great to see you, asalways, and I should say, dr
Biven Von Allman, I apologize,but you are a physician and have
been practicing as anobstetrician, for I won't say
you're old, but a long time 30years, 30 plus years, yeah, and
(00:46):
so really excited to talk abouttoday, specifically about women
with bleeding disorders and alittle issues about that.
But I think there's a lot ofeducation that needs to happen
and things that we're learningand we're just trying to move
the needle on.
How do we advance in that space, especially for women living
with von Willebrand's and maybeeven other bleeding disorders
that just don't know that theyshould be looking into these
(01:07):
things.
So I'm super excited to diveinto that topic, but I just want
to take a few minutes forpeople to get to know you a
little bit better, because it'sjust you have such an incredible
background and story and sotell us a little bit about where
you're from and also just kindof your journey of becoming a
physician and getting involvedin the practice that you're in.
Dr/ Bivin Von Almen (01:26):
I was originally born in Texas and
raised in five other states,ended up here in Louisiana.
I went to LSU Medical School.
Let's see that was many yearsago, 1983 to 1988.
I went through residency atCharity Hospital and all the
charity hospitals from 1980.
(01:48):
Oh sorry, 19.
What years did.
Jonathan James (01:52):
I say so sorry yeah 1988 to 1992.
Dr/ Bivin Von Almen (01:57):
And then I started in private practice and
I did obstetrics and gynecologyfor about 13 years and then I've
been doing GYN surgery for thelast 30 plus years and then
retired Wow, so yeah.
Jonathan James (02:09):
Well, I, you know, one of the things that I'm
always inspired by is yourpassion and your empathy.
I think a lot of times, um sooften, I know, for me I've had,
I have been a person that hashad white coat syndrome on more
than one occasion where I walkin and I just don't know.
You know, I get all high bloodpressure and everything else,
and so sometimes that's a resultof you know, sometimes you have
(02:31):
expert physicians that aremaybe don't have always the best
bedside manner, but you are notthat person.
You're the extreme opposite ofthat, and we have many friends
that you've helped through theyears and, of course, you've
helped my family as well, andand I've just, I've just always
been so blown away at how muchempathy and willingness to
listen and really hear what theneeds are.
(02:52):
I know, when I got to know you,you were still working at a uh,
a hospital that was a nonprofithospital and, um, one of the
reasons why you went there isbecause you just cared for
people so much.
You couldn't make a lot moremoney at a lot of other places.
But you wanted to really helpthe people that couldn't get
help any other way.
And tell me a little bit aboutyour tenure there.
I know that that was a passionfor you, but you worked on
people that really had noinsurance, they had no ability
(03:14):
to pay, they had no, no ability.
You, you really served theleast of these really in many
ways, right.
Dr/ Bivin Von Almen (03:19):
Yes.
Well, a lot of them basicallyfell through the cracks, either
medically, socially,economically, and always had
bigger problems than they reallywould like to admit to Just
learn to deal with it from theperspective of bleeding to a
(03:40):
point of anemia that needed tobe transfused, sometimes four or
five times a year, and reallyneeded.
They needed help and the wholepurpose was to try to help them
out.
I mean, that's why we're inmedicine to begin with.
Right Is to help other people.
It's not about us.
Jonathan James (04:19):
So there's a main reason In those types of
settings and I've been in someof those hospitals and they are
really not easy to work in it'slack of resources, lack of staff
, lack of medicine, sometimeslack of all kinds of things, and
so you see, lack in everydirection and to work in that
environment.
How many years were you there?
You were 20, over 20 years.
(04:39):
Yeah, yeah, 20 years.
And so to work in that kind ofenvironment for that long is
almost like staying in aperpetual sense of residency
almost in a way, I would expect,because you're just Similar.
Yeah, you're just working in aspace that just doesn't have all
the latest, greatest technology.
Dr/ Bivin Von Almen (04:55):
Bells and whistles are out there.
Jonathan James (04:56):
Yeah, you don't have a coag lab that you can run
down and throw into acentrifuge and get an answer
right away.
You have to wait for everythingand that's tough a centrifuge
and get an answer right away.
You have to wait for everythingand that's tough.
But I know that you knowworking with specifically with
women with bleeding disorders.
One of the things we'relearning is that we hear stories
of so many people that are, youknow, I mean, sort of a driving
(05:24):
portion of that womenspecifically with bleeding
disorders is their menstrualcycle.
Is can sometimes be one of thefirst indications that there may
be something wrong, that theydidn't get detected, maybe in
some other form or fashion.
If you didn't have a, if youdidn't have, like, a family
history in a genetic sense, oryou weren't aware of it because
someone else had gottendiagnosed in your genetic line,
you you may not have anawareness.
And one of the things we talkabout a lot we just, you know,
(05:49):
have been doing some educationfor von Willebrand specifically.
One of the things we learnedabout is the CDC reports.
They estimate of almost nearly3 million people in the United
States could have vonWillebrand's disease, but only
roughly 33,000 of those peopleare even identified.
I mean, they don't even knowwhere the gross majority of
those.
So that tells me that there's ahuge gap of information that
(06:09):
hasn't been.
You know of people that reallyneed to see where these problems
are, so one of the things Iwanted to kind of ask you and I
and I think about a lot of timesas an OB is you know what is a
normal menstrual cycle timeframe, cause I, I think we've seen
some women that have hadtimeframes all over the map, and
and so you know a lot of one ofthe first questions that comes
(06:30):
up is do you have longer thannormal?
menstrual cycles yes, Well, Ithink most women are going like
well, I don't know, I just it'smy cycle you know like they
don't really put that two andtwo together, but since that's
such an important, maybeanecdotal way for the average
everyday person or female to beable to kind of indicate what is
(06:51):
a normal time.
Dr/ Bivin Von Almen (06:51):
Sure, three days to seven days.
Anything after seven is reallyconsidered abnormal.
Okay, some women have beenhaving cycles for 10 days and
two weeks and just been puttingup with it and thought that was
normal.
Wow yeah, anything that is inintermenstrual bleeding between
cycles is abnormal and should beinvestigated.
(07:12):
Anything that is heavier thanthey say five tablespoons, which
is roughly 80 milliliters ofblood in a cycle.
Now, most women aren't going tomeasure 80 milliliters of blood
, so they feel that if you'reusing a pad or a tampon every
hour or you're having to useoverprotection, that's certainly
(07:35):
excessive bleeding.
And some of those things don'tget investigated from the
perspective of bleedingdisorders because, being an
OBGYN, one of the first thingswe investigate is the actual
organ that's bleeding the uterus.
Or we investigate the hormones,or we investigate the ovaries,
or we investigate the lining ofthe uterus.
And I was just looking at adifferential diagnosis for
(07:57):
abnormal bleeding and bleedingdisorders is a tenth down the
line of a number of 11 or 12 inthe differential diagnosis, so
it's way down the line.
Jonathan James (08:08):
So meaning that a doctor would probably, if
there was abnormal bleeding, say, beyond that seven days or
beyond that pad per hour,whatever that measurement is
we're thinking about, if that'ssomething that's outside of the
norms, they would look at thoseother eight checkpoints before
they would Correct.
And you said bleeding disordersare eight or nine, Eight or
nine.
Down the line forms they wouldlook at those other eight
checkpoints before they wouldCorrect.
And you said bleeding disordersare eight or nine.
Eight or nine?
Dr/ Bivin Von Almen (08:28):
down the line.
Jonathan James (08:28):
So they're going to go through a checklist in
their own mind as anobstetrician to go and say, well
, is it this, is it that, is itthis?
And they've got to basicallythrough process of elimination,
eliminate eight things beforethey get to a bleeding disorder,
correct?
Dr/ Bivin Von Almen (08:41):
Wow, right, in other words, that's one of
the last things that actuallygets looked at, and sometimes
it's already to a point whereit's it's too late for them to
actually be treatable if they'vealready had an obstetric
emergency and possibly had apostpartum hemorrhage or a
surgical emergency and possiblyhemorrhaged post-operatively or
(09:03):
on the table.
Jonathan James (09:05):
I had a treatment center nurse many
years ago who is retired and notwith us anymore.
Actually, she passed away a fewyears ago, but she actually
told me one time she said,jonathan, because if we ever had
realized how many people thathad extended you know, abnormal
bleeding as women.
What we're finding is that wehad potentially thousands of
(09:29):
them that had hysterectomiesbefore they were of childbearing
years because they had bleedingchallenges.
And if we would have just knownthat we could have given them a
little bit of factor or alittle bit of fungal-lipidinase
protein or a little bit oftreatment, a little bit of von
Willebrand's protein or a littlebit of treatment, they could
have had a full life with all oftheir faculties.
Dr/ Bivin Von Almen (09:54):
The education is way behind the
process of treatment, which isamazing in 2024 to see the fact
that we still are there.
Jonathan James (09:58):
We really haven't advanced a lot.
Dr/ Bivin Von Almen (10:01):
Correct, which is where knowledge is
empowering to these people.
Yes, because if they don't haveand a lot of people a thorough
history includes a familyhistory A lot of people don't
have an idea of their familyhistory, maybe because of social
situations or maybe becausethey were adopted.
But most of the times, if wemake a diagnosis and somebody
(10:24):
has a real, strong familyhistory, it points you right to
that disorder and the need fortreatment.
That doesn't happen themajority of the time.
Jonathan James (10:33):
Even shame, right?
I mean, sometimes thelimitation is that even within
the family unit, it's seen assomething not to talk about, so
they just don't want to correct.
Seen as something not to talkabout, so they just don't want
to correct.
That's amazing, correct and sothis.
This is part of the reason whyI know, as as a person in
advocating for people withbleeding disorders, this is
(10:53):
something that makes me reallyfeel like man.
We got to get the word outbecause if more people knew that
anything over seven days,anything over a pad, an hour,
anything like that, maybe theywould start to ask questions.
Because if that doctor has togo through eight different
things before he's going toinvestigate that, but if the
patient comes to you and says,hey, I'm suspicious because of
(11:14):
these reasons as a treatingphysician, would that make you
want to maybe look into thatmore?
Dr/ Bivin Von Almen (11:21):
Absolutely I would.
I would um rule out the numberone through six things as
quickly as possible and thenmove on if there was not an
abnormality.
You mentioned the word shame.
Not only shame, but it's alsofear, for some people Fear that
they might find something wayworse than just a bleeding
disorder.
They may not know about thebleeding disorder, they may
(11:41):
think cancer and they may notwant to come until it's to a
point where they've had toreceive a transfusion.
I mean, if you see somebodythat's been in the hospital and
had to receive transfusion two,three times in a period of five,
six years, that should be a redlight.
That should go on.
Now, the other issue is thatyou know making the referrals to
(12:02):
the doctors and sometimes thoseare pretty long waits to
hematologists, oncologists, andthey don't want to wait that
long or they won't wait thatlong or maybe it's even in
another city.
Jonathan James (12:11):
That's really really uh, too hard for some of
my patients to be able to get to, absolutely, absolutely it's
very interesting I reallythought about those hurdles
being things that we have to,yes, consider when we're trying
to encourage people to providesolutions.
One of the there's so much oh mygosh, we could probably talk
for hours about just ruralhealth, because so much of what
(12:33):
work you've done in your careerhas been sort of targeting,
bringing resources to people inrural settings, and, and that's
such a huge need.
But I don't think we canunderestimate how much just that
travel, even even 30 minutes anhour away, much less wait times
to get into a specialist allthose things create hurdles.
So one of the things that Ithink is also important is that,
(12:54):
and one of the things I'm sograteful for you, um, getting
involved with hope and being apart of our board of directors,
and we'll we'll dive into someof that in a little bit too, but
I I wanted to, you know, justsay that one of the things I'm
so grateful for is that I dobelieve that more education
could be provided toobstetricians as a whole that
are practicing in many differentcommunities.
Maybe, maybe there's a way wecan continue to expand there too
(13:17):
.
But you know in in yourexperience, and I think about
you doing so much on thesurgical side were there ever
times that you were doingsurgery on somebody, that you
had accessibility and you sawand observed concerns of maybe
bleeding, that you thought, man,maybe I should look into this.
Dr/ Bivin Von Almen (13:33):
And then you did look into it and found
out it was von Willebrand's orit was some other kind of
bleeding problem, Absolutely,there were several times I never
had the ability to be able tofollow up with these patients,
mainly because they wouldn'tcome back, I mean they would not
go on.
I actually had a lady that camein and gave me a family history
(13:56):
before she actually had surgery.
Thank goodness, because shetold stories of her mother and
the scenario that happened withher in the operating room and
she almost didn't make it Wow.
And so we were able to give herfactor before we did the
surgery to help Right, andyou're well aware of that.
With bleeding disorders, youknow a factor.
I mean a lot of people thinkhemophilia.
There's no way they're nevergoing to have any, any operation
(14:16):
because they don't know aboutthe factors, they don't know
about the ability to pre-treatand to be able to make it a
safer environment for them tohave surgery Right.
And that happened a lot yearsago when I was in training and
right out of training.
Jonathan James (14:29):
Wow, well, truly , I mean, with the way you know
product and availability and allof these things, with the right
information, bleeding disordersis a problem that can be
resolved.
It's something that can besolved, it's not something that
is so.
I mean, I think that there's afear with.
I mean, 30 years ago, 40 yearsago, there really was such a
(14:52):
very, not just a lack ofknowledge, but there was also a
lack of availability ofmedication to be able to address
these issues.
Now we thankfully in the worldtoday, especially in first world
countries, we pretty much haveaccessibility if we can know
about these things ahead of time.
And so now the biggestchallenge is actually that
knowledge gap.
It's actually about helpingpeople understand, and you know,
(15:14):
especially Von Willebrand isone of those things where it's
50-50.
Some are men, some are women.
It's not like in hemophilia,for instance.
We experienced that, as I havesevere hemophilia.
Historically that wasconsidered just a male dominant
disease.
Dr/ Bivin Von Almen (15:29):
We're learning now that's not true
either.
Jonathan James (15:31):
And so so we're trying to understand and, as
we're learning, I think it'simportant that we get this
information out to so manypeople because, really, I think
the patients in many ways arethe people who might be
suspicious that these are thingsthat they might have trouble
with.
If, if you empower yourself withinformation, going to your
treatment plan with yourphysician to say, hey, these are
(15:54):
things I'm concerned about itcould like you said, that lady
that came to you ahead of timeit could actually provide you
the information you need to todo some investigation in that
direction.
And I think, as an OB, like we,we think very often in in
hemophilia it's like, well, youjust got to go to the treatment
center and you got to go see ahematologist, but, but a lot of
times the wait lists are verylong.
They're also very, in veryspecific places that can be
(16:16):
difficult to get to, and maybethe OB is the place where you
might be the most common placeto discover that, especially for
women.
And, uh, I just think that if,if we get the message out to
patients this is an area that ifthey, if they have the, if
you're suspicious, and if you'relistening to this podcast and
you're thinking, man, oh my gosh, like five tablespoons, eight
(16:38):
tablespoons of blood.
Yeah, that's me every month.
Maybe it's worth asking somequestions, Absolutely.
Dr/ Bivin Von Almen (16:45):
Absolutely.
If there's any doubt, askquestions and if the questions
are receptive, or if thephysician is receptive to your
questions, great, get him topush the ball forward.
If that means a referral, ifthat means doing some blood
tests, if they can do it, youhave to try to make that
available.
Yeah, if they can do it, youhave to try to make that
available.
Now, a lot of people will howshould I say this If they don't
(17:08):
know about the actual diseaseprocess, kind of stray away from
it because fear that they don'tknow anything about it and it's
not treatable for them, it'snot something that they can
treat.
And years ago, I mean when Ifirst was training, I mean
hemophilia was.
I mean basically people thought, well, that's just pretty much
a death sentence.
You know they're going to bleedto death if you don't, if they
(17:31):
have a problem, and that's stillI mean I hate to say this in
some social areas probably stillthought of as the same way
Interesting yeah.
Jonathan James (17:41):
Which is totally false.
Absolutely, but we don't, butthey know no better.
Interesting, which is totallyfalse, absolutely.
But we don't, but they know nobetter.
But they know no better, right,in medical school, I mean, you
know, correct me if I'm wrong,but I understand.
It's like you're going to be.
A very small portion of yourtraining is even going to
explain a definition of thesethings, right?
Dr/ Bivin Von Almen (17:59):
Right, correct, and unless you
specialize specifically inhematology, hematology, oncology
, you're not going to get thetraining in that.
Because even if you do internalmedicine, there's so many other
things that they have to knowabout.
I mean, they're going to know alittle bit about it.
They may know more about itthan, say, a pediatrician, they
(18:20):
may know more about it than ageneral surgeon, but
realistically we don'tspecialize specifically in
learning about that until it'ssomething that we have to deal
with.
Jonathan James (18:30):
Yeah, which is hard.
That's so interesting.
At what point do you thinksomebody might need to reach out
to a treatment center, wouldthey?
Would they go to their OB firstand ask that question and then
their OB refer them to?
Should they go to the treatmentcenter right away?
What do you think is the bestthing?
Because if they go to somebodywho's not educated on that issue
(18:52):
, I guess my concern and whatwe've seen happen sometimes is
sometimes that's just brushedoff and kind of almost dismissed
, because everybody doesn't havethe luxury of being in
relationship with somebody asamazing as you, that you're
going to take that informationto heart, you're going to
investigate, you're going to you, but not every physician is
(19:13):
like that, and so I guess thequestion is like, if there's a
dismissal there, should theystill keep pushing and maybe
look for somebody in hematology,or should they wait on their
obstetrician to make that?
Should they go to the PCP?
I don't know.
Dr/ Bivin Von Almen (19:25):
You know what do you recommend?
I would say that they need toget a second opinion from
another if it's a primary careprovider, if it's a family
practitioner or if it's ahematologist.
That kind of dismissed them andthey never did any testing on
it.
If you get to that point andsecond or third opinions, you're
not getting anywhere.
If the treatment center is theplace where they can get
(19:47):
evaluated, that would be theplace to go.
That's what I'd recommend.
I didn't even know abouthemophilia treatment centers
when I was trained.
Jonathan James (19:54):
And you were ordering medications in some
occasions for surgeries, evenfor these types of issues,
absolutely, but you didn't evenknow to refer to that.
No, yeah, and that's right hereno education, yeah, but you
didn't even know to refer tothat.
No, yeah, and that's right here.
No education for that?
That's amazing.
Well, there's so much more workto do.
I do feel like and I'd becurious to know your thoughts on
this how important is thepatient themselves, how
(20:18):
important is their determinationto find answers to getting an
actual solution?
Dr/ Bivin Von Almen (20:28):
Very If they continue to have the
problem, it continues to be asituation that is
inconveniencing them.
It's very important for them topush that ball forward, so good
yeah, and they may run upagainst egos or run up against
people that don't want to doanything about it.
(20:49):
Continue to seek out somebodywho cares.
Jonathan James (20:53):
That's good.
I heard you say one time in oneof our conferences you said you
know?
I said if you don't get whatyou need in a first opinion, get
a second opinion.
If you don't get a secondopinion, get a third, fourth,
fifth, sixth, seventh opinion.
Dr/ Bivin Von Almen (21:04):
If that's what it takes, yeah.
Jonathan James (21:05):
Right, I love that because it's so, and I, you
know, as a person living with ableeding sore on my end, I have
been in those situations whereI felt like I wasn't being heard
.
I felt like I wasn't beinglistened to.
How being listened to?
How does somebody stay inspiredto keep?
(21:25):
Because I feel like thatthere's a fine line.
We talk about this a lot inadvocacy is.
I think that there's a fine linebetween being um, an activist
and and and an advocate.
I think that you can almostlean into when you feel like
you're not being heard.
You can almost lean into aplace of being adversarial and
that's not, that's not going toproduce anything either, no, and
so I think there's a fine linein that.
But you know, one of the thingsthat I've wrestled with a lot
(21:49):
is how to inspire people to, tokeep to, to stay inspired and
and to keep asking questions, tostay curious.
You know, right, and and youhad to face that as a physician
too, because you were nottrained to be a hematologist,
correct.
So how did you stay inspired inyour practice, in your career,
to be able to stay, start sayinglet me get curious about things
(22:11):
that I will.
Maybe I wasn't trained in.
Dr/ Bivin Von Almen (22:13):
Right?
Well, many, many of the aspectsof what the patient will come
in with when it's not somethingspecifically in our specialty.
If you're not listening, ifyou're not paying attention,
you're not going to pick it up,and I never forget that.
I was told that if you listento the patient, tell their
history, they'll tell you thediagnosis.
(22:33):
At least 90% of the time,no-transcript.
We all have things going on atwork.
We all have things going on athome.
We all have situations going onoutside of work, right, and if
(22:57):
you're not being listened to asa patient, then you need to go
and find somebody that's goingto listen to you and going to
continue to help you along withthat, trying to make the
diagnosis or find out what theproblem is.
Yeah, if you're not satisfied,that's a good point.
That's a good point.
And it's hard.
(23:19):
You can't be how should I say?
They can't be very negative orpushy bitter.
They just need to try toemphasize the fact that they
would like to really know whythey're having the problem.
Jonathan James (23:25):
Stay focused on the problem, correct Nothing
else.
Don't get distracted by theemotions or the fear, or the
shame or the which can be hard,which can be so hard If you've
been dealing with it for yearsand especially when you're
suffering, because this is not,you know, one of the things that
I think is so important, and Iwould think anybody in the
nonprofit world or you know like, even even in the work that you
(23:46):
did within nonprofit hospitals.
But your whole premise is, yourwhole life is really wrapped
around trying to reduceunnecessary suffering and at the
same time, the rigors ofschedules and and all of that
stuff can put a lot of stress,and the same is true for the
patient.
The patient a lot of times canbe in a situation where they're
(24:06):
they had to take hours off ofwork to even show up to an
appointment and now it's goingto take another 30 minutes for
you to have a discussion or aconversation and sometimes, if
you're not getting feedback, itcan be really, really, really
painful to keep that momentum.
But I just want to encouragepeople who may be listening to
this thinking oh my gosh, likeI've noticed this tendency and
(24:26):
I've noticed this problem, and Ialmost died in childbirth or,
you know, I almost had theseproblems where I had a.
You know, I was very depleted,almost needed a transfusion.
Maybe you should ask questions.
Maybe you should keep askingquestions and not just be
satisfied with that.
Maybe you did have a familyhistory, but there was never a
label for it.
Well, that's okay, Keep askingquestions, because we're all
(24:51):
constantly in a state oflearning.
I think sometimes people I talkto so many people out in the
American public, so much, it'slike well, technology is so good
today and AI is so great and wehave all these answers now it's
like, but we still don't knoweverything.
I mean, in so many ways it'sunfathomable to think that we're
in a state of you know of thisuniverse where we can't, we
(25:12):
really don't know all theanswers, but we really don't.
There's still so many thingsthat are unknown yet right?
Dr/ Bivin Von Almen (25:18):
Yes, I mean , you said 3 million people with
von Willebrand.
Jonathan James (25:22):
Right.
Dr/ Bivin Von Almen (25:22):
Only 33,000 diagnosed Right.
What percentage of those peoplethat have it don't know Right
and their family doesn't knowthat they have it Right.
And people that are even closeto the bleeding disorder
community find out.
Oh, after I finally startedlearning about bleeding
disorders, somebody in my familyactually had this, so their
(25:43):
eyes are open to it and it'sjust not something that we pay
that much attention to, andespecially in the medical
profession.
Unless you deal specificallywith the bleeding disorder
community, it's not one of thetop priorities on the list, like
I said that differentialdiagnosis is way down there On
metarrhagia, the heavy bleedingor the long prolonged periods.
(26:05):
I think it's eight or nine onthe differential diagnosis.
On metarrhagia, the heavyperiods, it's nine or 10 on the
differential diagnosis out of 11to 12 diagnoses.
Almost at the bottom yes, wow.
Before it's even checked off thelist to look into or
investigate Wow, that it's evenchecked off the list to look
into or investigate, correct Wow.
That's amazing.
And there's so many thingshappening, whether it's
postpartum hemorrhage, whetherit's postpartum hemorrhage to
(26:28):
death, whether it isintraventricular hemorrhage on a
baby that's born vaginally andthe mom was never diagnosed with
any type of bleeding disorder,and yet the child, a male child,
comes out with hemophilia.
Right, that could have beenprevented, right, you know
post-operative hemorrhage, right, or not making her off the
(26:48):
table from surgery.
Jonathan James (26:50):
Right, I would argue that this obviously
because of the gap again goingback to those CDC numbers 30,000
that are diagnosed.
Dr/ Bivin Von Almen (26:57):
Three million.
Jonathan James (26:58):
Three million that are you 3 million that are
anticipated?
I think, because of that gap,it's very logical to me to
assume that we have some, thatthere's many, I mean, according
to those numbers, there'smillions of people in the United
States living with this problemthat literally don't know, and
so it's worthy of us to do thisNow.
(27:19):
For women in this case,obviously, the menstrual cycle
is happening every month, andthat could be an indication.
But in some cases, what if youhave other comorbidities, like,
say, for instance, you have, uh,you're not having normal cycles
at all?
I mean, for instance, I havetwo daughters both both are you
know, of the age where they'rehaving their menstrual cycles,
(27:40):
and they had other issues, likePCOS, that prevented them from
having cycles for a period oftime.
And so that was the firstquestion that was asked.
Well, when they said, well, Ihaven't had a cycle in three
months, or something like that,well, oh, well, then you don't
have a bleeding disorder, whichlater we found out was not true,
they actually both had ableeding disorder, and so I
(28:03):
think it's easy to talk aboutthe cycle as being a potential
problem, but you could have thatsame person that could be in
childbirth.
You brought this up and that'swhere it raises its ugly head,
is in the middle of a trauma,correct, right, correct.
And so what do you do?
I mean, if the doctor's notexpecting it, if the staff is
not expecting it, if you're notin a hospital that knows how to
look for that and you don't haveenough?
I mean, there's far more peopleat risk of this.
(28:26):
I think that's why we havepotentially millions of people
that are at risk for this thatjust haven't heard, they just
don't know.
Dr/ Bivin Von Almen (28:31):
We've just talked about von Willebrand's.
What about hemophilia?
I mean, when I was goingthrough residency, it's only
males that have hemophilia, thathave bleeding disorders.
Now we know that there'sfemales, that's right.
So I mean, when you get to thatpoint where it's an obstetric
emergency or a postoperativeemergency, that's when the fire
drill starts, that's right.
Even if the fire is put out,that doesn't mean that you
(28:53):
shouldn't continue to work upthe patient.
That should be a red flag rightthere, right?
But unfortunately that doesn'thappen all the time.
Right?
And if the patient is in thatsituation, they have to continue
to inquire.
Jonathan James (29:04):
Yeah, the patient's got to be in the
driver's seat.
Absolutely, they have to be theone to put the pressure on and
ask questions from everydirection.
It can't just be, you know, Ithink that there's a tendency
for all of us to want to.
You know, um, I know, I know.
Part of the white coat syndrome, for instance, is something
where you're fearful when you gointo a doctor because you
haven't been trained in medicineas a novice.
(29:27):
I'm going in and I wasn'ttrained to be a doctor, so I
don't know.
There's a lot I don't know.
You know, at the cellular level, I could not tell you how an
enzyme interacts with a protein,ends up with a.
I don't know.
You know what is a genecompared to a red blood cell?
I, you know what is a genecompared to a red blood cell?
I, you know, sure, you know.
But the point is is that wedon't really, you know, while,
while, while I think it's easyfor us to focus and say we're
(29:50):
not the experts, that individualperson is still living with
their own flesh and blood, theirown body, I mean a lot longer
than any researcher will be ableto see that any investigator,
any doctor, any treatingphysician, and that's not a
knock on the profession.
That's just to say that you mayhave things that you notice
(30:11):
within your own life that raisetheir head at variable times,
like, for instance, my daughter.
One time when she was verylittle, she fell and she hit her
lip on the stairs and it bustedher lip.
Well, don't you know thedoggone thing like bled for like
three days and we couldn't getit to stop and we even asked the
question is this, possibly this?
(30:31):
At the time, the predominantthinking was not that cause
girls can't have it.
But it wasn't because weweren't asking questions, but we
didn't continue to keep thepressure on.
And so a decade goes by,there's other problems and now
she has some joint damage as aresult of not asking those right
questions.
And I can't blame myselfentirely to say that it's 100.
(30:52):
I can't walk around with theshame of that and guilt of that.
I've got to be careful tomanage that emotion in my own
heart.
But at the same time I reallycan't blame the medical
physicians that we're looking atat the time, either because
they didn't have the information.
But it's incumbent upon me asthe parent or as the person
living with that I've got tostill keep asking questions if I
(31:12):
see these trends, because I'mlooking over decades of my own
personal life and I don't thinkwe should downplay that as a
non-physician.
Dr/ Bivin Von Almen (31:25):
Issue Issue Right, and you live with
yourself every day.
Right, the doctor sees you onceevery year, once every six
months.
Right, if it's an OBGYN, theymay see them once during their
pregnancy.
See them once a year after thenfor pap smears or annual exams
Right, for maybe five, ten years.
Right, if it's a really longtime, it could be 20.
Well, by then you should havean idea.
(31:46):
But Well, by then you shouldhave an idea.
But then you have to rememberthis also, jonathan the things
that you've gone through withhemophilia bring a tremendous
amount of pains, burdens,battles that you have to deal
with, and sometimes it's hardfor the patient to remain
focused, to ask the rightquestions over and over and over
again because of what's goingon in their life.
So that's really hard.
Jonathan James (32:10):
That is hard, which is why we need
organizations like Hope to helpencourage, and that's one of the
things I love about what we dois we, we try to do.
Moments like this, we try to doeducational opportunities.
We try to help empower peoplebecause, at the end of the day,
like it is a long, it's alifelong road.
It's not just a long road, it'sa lifelong road and it's one
that really does.
There's lots of ebbs and flowsand there's lots of things that
(32:33):
occur over the over decades anddecades of a lifetime and and
very likely you're going to gettired You're going to need some
encouragement that you've beensuch a huge, really answer to
prayer for me personally asbeing a part of our team,
because when you came onto theboard of directors, we were just
(32:54):
starting to really step outinto how can we really educate
people on this issue of howwomen are impacted and try to
really make some strategicchange in that area.
Tell me a little bit about,like, what drew you to hope,
what made you want to getinvolved with hope and and and.
What is it that you're excitedabout as you look into the
(33:16):
future, of what we could do as a, as a group and as a team?
Dr/ Bivin Von Almen (33:19):
The heart of hope is really what drew me
in.
I'm just so humbled to be partof it, be on the board, because
when I first initially wasapproached about it, it was like
I didn't have time to do that.
I was busy with other thingsgoing on in life.
Then, when I realized what theheart of hope was, it's I don't
have time not to do that.
Y'all are here strictly for thepatient.
(33:41):
You're here to help people incrisis.
You're here to help people inneed.
You're here to educate people.
I would say at this point intime, you're probably pushing
the ball forward more withwomen's health than any other
organization that I know of.
From the perspective ofbleeding disorders, that's like
(34:04):
number one in my eyes, becausethat's what I take care of.
Women are awful, awful, a lothow should I say this?
Underappreciated and nottreated with the same especially
racially, some women and nottreated with the same respect
and the same amount of interestthat some other people are
(34:28):
treated with.
So I took care of an awful lotof those women and just to have
them come in and feel likesomebody was caring about what
was going on in their life,somebody was listening, somebody
wanted to help them.
That's what you guys do all thetime, a hundred percent.
And that's what drew me in.
And then, when I said, okay, Igive, I'm going to be a member,
(34:51):
I sat in here and I thought, whyam I even here?
Why did they even ask me?
I'm not even qualified to dothis.
Oh my gosh.
Jonathan James (34:59):
But then I realized no, I wasn't qualified.
Dr/ Bivin Von Almen (35:01):
I was called to do this, wow.
And as I was called to do this,then he's going to give me the
qualifications that I need.
That's so good, so that was thebeauty of it.
And then I just see the justexpansion of the people that
y'all are reaching.
Yeah, and it's not because youwant it to be about you, you
want it to be about hope, youwant it to be about the people.
(35:23):
That's right.
That's right.
Jonathan James (35:26):
That's why we're all here is for others.
That's so good.
Bevan, oh my gosh, I yeah, Ican't even begin to say how
grateful I am for yourinvolvement, because it it's not
just a project for us.
I and I think that that'swhat's important for people to
understand is that it's not welive this number one.
(35:46):
I mean I live it personally.
You've seen so many of thepeople that we you know, so many
of our employees, so many ofthe people that are involved, so
many of our volunteers.
I mean it's like it affects usat every, the fabric of who we
are, not just resources and andexpanding, you know, the
(36:11):
possibilities of treatment andall of those things, and really,
truly advocacy work for womenwith bleeding disorders is it's
not like a trendy thing.
We're trying to pick up and Ithink that that's something
that's unless you're involvedreally deeply, you probably
don't know that, because some ofthese things can feel like
they're a little bit a littlebit like oh, everybody's talking
about, let's just talk about it.
You know, and I would say thatthere's a lot of folks out there
(36:31):
in the bleeding sort ofcommunity that really are doing
a lot, rolling up their sleeves,committing to trying to make
change, committing, trying toimprove, which is so
heartwarming it really is, andso, but for hope, it's not
something for us that we're justtrying to like, adopt as like
just an extra thing that we'redoing to us.
This is central to what we doand, uh, we're here for the
(36:53):
disenfranchised entirely.
We're here for the people thatdon't.
We want to meet unmet needs.
We're not trying to duplicatewhat everybody else has done.
We're not trying to just jumpon a bandwagon.
Even this is something foryears upon years that we
continue to layer upon layer aswe learn.
We want to pass thatinformation along.
You said earlier, knowledge ispower, like that I mean truer
words, right, we never spoke, Imean it's.
(37:14):
It really can be empoweringwhen you have the knowledge.
And my hope is is that peoplelisten to a conversation like
this or they look at otherresources and they think about
okay, maybe, maybe I can get thecourage up to ask my OB like am
I maybe above average?
Am I bleeding more than normal?
And I hope that one day in timeI will be able to look back and
(37:38):
say, oh my gosh, now we have 2million people that are
diagnosed, not because I want tosee just everybody have a
bleeding disorder.
It's kind of like pointing toministry of insurance.
You know, you just, you don'treally necessarily wish it on
anyone, but at the same time,it's like that knowledge gap has
got to close, and I think itstarts with the patient
community.
At this point, in an idealworld, I'd love for everybody in
(38:01):
every medical school to beeducated up to the hilt on these
things.
But you know what?
There's thousands of rarediseases I talked about.
You've heard me say this at alot of our conferences, but it's
like it's still amazing to meto think that there was, like
what?
7,000 rare diseases diagnosed.
A very good situation in thesense that we have a lot of
resources that maybe othercommunities don't.
So we hope to help with this.
(38:37):
We hope to help with even otherrare and ultra rare diseases
that don't have any resources orsupport.
But I want people to know thatwhat we're hoping to do is
really commit to this for thelong haul.
It's not just a project.
Long haul and not just.
It's not just a project.
Dr/ Bivin Von Almen (38:54):
It's not just a trendy thing.
It's something that's centralto who we are.
That's another thing about theheart of hope.
It's out to help those whocan't help themselves, and
you're always looking forsomebody else to help, which is
just the amazing thing to me,which is so humbling to me.
I look at y'all, especially someof the people that I know have
hemophilia and are gettingtreatment, and I think to myself
(39:14):
and they go on every day andcontinue and don't gripe about
it, don't moan about it, andlook at our lives, those people
who aren't affected, and yetwe're going to complain about
something or grumble aboutsomething, and I'm thinking we
have it so good compared toy'all, and y'all are just going
on and on.
And I think to myself, after 34years of doing what I've done,
(39:39):
all the possible treatments thatwe've had, whether it's
hormones, whether it's surgery,whether it's aggressive surgery,
and people are still havingthese problems.
We're not curing them.
We're not taking care of theroot issue.
We're just taking care of thesymptoms.
We need to get to the rootissue, to the deeper root of
what's going on, to actuallytake care of the patient
(40:00):
themselves.
Because, even if they've hadbleeding issues and you've taken
care of their bleeding problemsfrom the perspective of some
hormonal treatment, or theybreak through and then you've
had to do surgery minor surgery,and then you've had to do major
surgery.
What happens after the surgeryis over?
Are they going to havesomething else going on if they
truly have an underlying problem?
Jonathan James (40:19):
Yes, they will.
Dr/ Bivin Von Almen (40:20):
Did we really take care of the root of
the problem?
Jonathan James (40:23):
No, that's what we need to get to, which is why
it's incumbent upon the patientpopulation to continue to ask
the questions Because, honestly,it's a point of diminishing
returns.
You can't expect every singledoctor you encounter to be the
most expert at every singlething.
I don't go to my cardiologistto see how well my hemophilia is
(40:45):
doing.
Dr/ Bivin Von Almen (40:51):
There's just too much information that
we all know.
Jonathan James (40:53):
There's no, possibly every person, every
specialist can know everything,and so, um, you know, I do think
it's incumbent upon us to toeducate ourselves.
What to that end?
What?
What do you think people shoulddo if they want to educate
themselves?
If they, if they're suspiciousof these things being
potentially probably, forinstance, men that have von
(41:15):
willebrand's disease, it's avery common symptom that they
would have excessive nosebleeds.
That might be seasonal.
They might be seasonal, butthey, they bleed more than
normal from a nosebleed.
Sometimes people have bleedingin their gums and their teeth.
They have, they have bruising.
That occurs, they just don'tUnusual bruising right.
It feels like it's more commonthan it would be maybe their
(41:37):
friends, Right?
What would you do to encouragemaybe a guy or a girl who might
suspect that there's somethinggoing on here that might be
different?
How would you encourage them toget to the education?
Because I think that that'sthat's still a question mark out
there.
I mean, we're trying to do whatwe can with maybe online stuff,
but what do?
Dr/ Bivin Von Almen (41:54):
they do.
Well, I mean, as we all know,the internet's right there at
our fingertips.
I mean people go to that allthe time Search out somebody
that has a problem or has theproblem, or a organization that
deals with those specific typeof problems, and one like Hope.
They're more than willing tohelp the patient and educate the
(42:15):
patient and give theminformation and direct them in
the right direction.
That's right, which is anothersuper positive thing about the
heart of Hope yeah, you'realways willing to help people
out.
Yeah, in more ways than justthe ones that are in crisis,
people that are inquiring.
That's so true.
That's what this is all about.
Jonathan James (42:32):
That's so true.
We were talking about thisearlier about how we have a
staff member here who came towork and really they came with a
deep amount of professionalbackground and all kinds of
things and they got here andthey started to get.
They had known that some oftheir family members might, if
they ever had to have a surgeryor some kind of extreme thing
(42:54):
happened, they might needsomething, and they weren't.
They didn't know what it was,and then they started to learn
through some of our onlinethings and they were like wait a
minute.
They went back to their familymembers and said, what do you
have again?
And one of them knew and one ofthem didn't know.
And and one of them didn't knowand one of them started to.
Well, it turns out she's afemale that has Von Willebrands
(43:14):
and she just had to have adouble knee replacement and
she's only in her late forties,early fifties and you know
there's a suspicion that maybeif she had had treatment for him
.
Well, this employee startedhanding them the information he
was learning and he's like, ohmy gosh, like how, why didn't we
know all this before?
(43:35):
But it took him working, youknow, in the environment to even
realize oh my gosh like, andthat's the piece that I hope to
solve someday.
Like I, you know, as anorganization, one of the things
that we've had a passion for,obviously, is serving the people
that know what the problem is,but I never actually, you know,
I've now been, you know, workingas an employee of Hope.
(43:56):
I mean, my wife and I startedthe organization 15 years ago,
but as an employee, I've beenhere for 11 years, I think we
just said and so in thattimeframe, I never imagined that
we would be doing campaigns andtrying to reach out to maybe
mass population, not just thesesmall niche communities, and it
(44:18):
is amazing to think about thefuture of what we could be doing
.
We need an army of people toget educated so that we can
infiltrate every community.
We can infiltrate every, andthe internet's a good place to
start.
People can join an onlineeducational session and listen
in.
We just did this VonWillebrand's conference.
We're planning on doing thatfor every year going forward.
(44:39):
But those online things youcould invite a neighbor, you can
invite a friend, you can invitesomebody that said you know, I
think maybe there's something Iknow about that.
Well, maybe invite them.
You know, I think maybe there'ssomething I know about that.
Well, maybe invite them.
You know, get involved.
You know we have our hopeconference coming up in the fall
super exciting.
We have a few scholarships thatpeople can get to travel.
But even if we can't, you canaccess that same conference
(45:01):
online.
Maybe they can come and listento some of those sessions to
understand, to get some of thelanguage, to get some of the
learning about, maybe, whatquestions to bring to their
doctor or their clinical setting.
My daughter, my oldest daughter,actually got her first pretty
educated on how this stuff works, and it was genetic.
So we're looking for the samething.
We'd gone to specialists andit's probably not whatever, but
(45:23):
nobody had really drawn bloodwork.
Well, I was able to get my PCP,my family doctor, our primary
care physician, to actually pullthe blood work and they were
like, yeah, sure, we'll pull it.
We can't maybe diagnose itnecessarily or provide treatment
.
We can actually look into it.
Well, sure enough, there was theanswer right there and she's
like, oh, this is definitelywhat that is.
So then we had information totake to the specialist and say,
(45:46):
oh, this is what.
And then it was a differentstory after that.
But I just think that's whatI'm excited about, about what
you and I get to do as as partof this really movement in a way
is to really bring not onlybring people together to learn
and grow and support each other.
That's super huge.
I, I, I you can neverunderestimate how powerful that
(46:06):
is but also the possibilitiesthat there's millions of people
out there that need to hearabout this, that are suffering,
and some of them I think some ofthem are having early mortality
.
Some of them are dying as aresult of this lack of knowledge
.
Dr/ Bivin Von Almen (46:19):
Suffering silently because they've never
actually known about it.
Jonathan James (46:24):
Right, and it's exciting because the needle is
starting to move a little bit.
We just recently got one of themedications for specifically
for vulnerable brains whichtalked a lot about, just got an
indication for preventativetreatment.
That's not been somethingthat's really been on the market
and so that's exciting.
There's some movement there.
We know that there's some newstudies coming out, new
therapies coming out down theline.
(46:44):
It is really exciting to thinkwhat could be solutions in the
future.
But I certainly hope anybodylistening to this podcast today
I hope you've been inspired andenergized and excited about the
possibilities and what you couldlearn and I know we're
preaching to the choir herebecause if you're listening to
this, you obviously are alreadyself-learning, which is great,
but we want you to get involved.
(47:05):
We're real people with anoffice that we take calls every
day, all day, and we want tomake certain that people can
call us and just reach out, pickup the phone.
I mean, you know, if you justcall the main 800 number, you're
going to get somebody that's acaring, thoughtful person that's
going to want to hear yourstory out and listen, and we
might very well have some toolsthat we can send you or empower
you with that can help you tohave some of those important
(47:25):
conversations and so hard ofhope, yeah, so true.
So, biven, thank you so much forfor being invested, because I
know every minute that you spendaway from family and your
career and everything else Iknow is a sacrifice, and and and
I just want to say thank you somuch for being invested with us
as a board member to help guideus down this journey, to learn
(47:47):
how to, how to explore andexpand our reach, but also thank
you for taking the time todayto just invest in this moment my
pleasure.
Thanks for having me.
Well, thank you so much forlistening to this podcast.
I hope it was encouraging toyou.
You can find more resources onhope-charitiesorg and we would
love, love, love for you to getinvolved in one of those events
we talked about.
But also, we're really excitedabout the future of what we can
(48:11):
do together, and so we need youto get invested with what we're
doing here, because there's somuch more to do and we can only
do it with your help.
So, thanks so much forlistening to this podcast.
We hope to see you on the nextone.
Take care.
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