September 12, 2024 • 29 mins
Today we welcome Erin Kreszel, who has dedicated herself to raising awareness, providing support, and policymaking after losing her cousin to a ruptured brain aneurysm. Eleven years ago, she and her sister founded The Bee Foundation for Brain Aneurysm Prevention.
Erin shares some surprising statistics with us, e.g. ~1 in 50 people has one, and even someone perfectly healthy and young can have one rupture, causing a hemorrhagic stroke.
Prevention is key. It is considerably easier to treat prior to rupture. She encourages us to advocate for ourselves. Ask for the MRA if you are concerned or have a family history of aneurysms.
She explains the different treatment options for unruptured brain aneurysms, such as clipping and coiling, and the importance of early detection.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Instrumental
bindwaves-hosts (00:10):
Hi, my name is Kezia.
I'm a stroke survivor and memberof BIND.
And hi, I'm Carrie, also astroke survivor and a member of
BIND.
And today we're interested,we're talking to Erin Kressel
because September is BrainAneurysm Awareness Month, and
Erin is the co founder andexecutive director of the Bee
Foundation, which aneurysmprevention.
(00:33):
So welcome, Erin.
erin-kreszl (00:36):
Hi, how are you?
It's wonderful to be here today.
Brian (00:40):
Welcome to BINDWAVES, the official podcast of the Brain
Injury Network of Dallas.
I'm Brian White, BIND'sExecutive Director.
On each episode, we'll beproviding insight into the brain
injury community.
We'll be talking to members andprofessionals regarding their
stories and the important roleof BIND's Clubhouse.
We work as a team to inspirehope, community, and a sense of
(01:03):
purpose to survivors,caregivers, and the public.
Thank you for tuning intoBINDWAVES.
BINDWAVES Let's get on with theshow.
bindwaves-hosts (01:12):
Great, thank you so much.
Will you just tell us a littlebit about yourself?
erin-kreszl (01:16):
Absolutely.
My name is Erin Kressel and I'mthe co founder and executive
director of the Bee Foundation.
My sister Christine and Ifounded the organization almost
11 years ago after we lost mycousin Jenny to a brain aneurysm
rupture at the age of 27 in2013.
Um, so we started the foundationwith the sole goal of trying to
(01:41):
prevent brain aneurysms and kindof grown to be one of the
leading organizations in thefield of brain aneurysm
prevention.
bindwaves-hosts (01:52):
Oh, that's, that's really cool.
I actually, um, we did a littlebit of research of you and, um,
I think like many of ourlisteners, we, we haven't met
you in person and it's reallycool that we're doing it
virtually, but hearing that itwas you and your sister that
started the organization andthat you're doing it after, you
know, having a family loss,it's, it's very, um, yeah,
(02:15):
strengthening and really, reallycool, really.
Um, but of course, like us andmore specifically me and some of
our listeners, we don't really,um, know too much about
aneurysms.
So if you can kind of explain tous like a little bit of the,
what you know about aneurysms,that would be very helpful.
erin-kreszl (02:35):
Sure.
Um, so the, the statisticsaround brain aneurysms are, um,
relatively, uh, unknown to thegeneral public.
I think what most people arestruck by is that actually 1 in
50 people have a brain aneurysm.
So that's about, um, um, 6million people, a little more
(02:56):
than about 6.
7 million of the U.
S.
population.
It's a disease that can affectany person.
It's primarily adults, but itdoes happen in children, but it
really can affect anybody.
And the most common ages reallyare Between 40 to 60, it
(03:19):
impacts, um, Latinos and Blacksat about two times as, as the,
um, general population and, um,women are actually more at risk
as well.
Um, the.
You know, a lot of times, brainaneurysms scare people.
It's really hard to identifythem prior to rupture.
Um, and, um, but what is our, iskind of the, the key warning
(03:44):
sign is people have, um, whatthey generally call the worst
headache of their life.
Um, it's what's known as athunderclap headache.
Um, and that is a sign that youdo have a rupture.
Um, but there are other, um,signs that, that can be
experienced.
Um, a lot of them are similar toischemic stroke symptoms and,
(04:05):
um, they would be, um, kind ofpain coming through the eyes,
severe neck pain, um, droopingof your eyelid.
Um, and general, um,disorientation or even, um, a
seizure.
And, you know, I think the, thebest piece of advice that a lot
(04:26):
of our doctors have told us isif you are experiencing a
headache that is different.
Then any, anything else on thepain scale, you know, if you're,
if you're experiencing aheadache, that's on a one to 10
pain scale, you're saying 11,you need to get yourself to an
emergency room and, um, ask fora, um, CT scan or an, um, MRA or
(04:49):
an angiogram or spinal tap.
bindwaves-hosts (04:52):
Okay, well, that's good to know.
Um, that's crazy statistics,though.
I kind of knew them, but I don'tthink the general, like you
said, the general public doesn'tknow, and that's, that's kind of
what's crazy.
But what maybe also are somemisconceptions about brain
aneurysms?
erin-kreszl (05:08):
Um, I think the biggest misconception that we
try and combat is age.
A lot of people generally thinkof stroke as something that, um,
or an aneurysm as something thatwould affect an older person.
Um, you know, half of the deathsworldwide are from aneurysms are
people under the age of 50.
Um, so, you know, when my aunt,when my cousin passed away, it
(05:31):
was something my aunt, alwayssaid is like, if I had seen a
billboard, if I had heard amessage on the radio that these
stroke symptoms and somethinglike this could happen to my 27
year old daughter that wasotherwise healthy, um, you know,
I'm not sure it would havechanged the scenario, but she
just wished she knew that.
And, you know, the, um, general,risk factors of brain aneurysms
(05:55):
that are in the literature andonline are, um, you know,
smoking and drug use and, um,high blood pressure, um,
experience with family memberswith kidney disease.
And in general, the people wemeet, the people we know did not
have those, um, risk factors.
And I think that's, that's,what's really hard.
(06:17):
To reconcile is you haveotherwise healthy individuals
and young people who are in theprime of their life, not showing
any signs that would would provethat they have a ruptured
aneurysm that leads to ahemorrhagic stroke.
And so, um, those misconceptionsare what we are trying to
(06:40):
communicate to the broad publicand also to medical, um,
patients.
People in the healthcare field,such as EMTs and first
responders and emergencymedicine doctors, and to know
that this is something that theyshould at least be aware of.
look at if you're experiencingthe worst headache of your life,
(07:03):
get a scan, and also, um, askthe questions about family
history.
If you have, um, two or morepeople in your family, then, um,
it is said that you are, have ahigher likelihood to also have
an aneurysm.
And so, you know, if you havetwo or more people, you are
eligible by insurance to get aMRA, which is, um, an MRA is
(07:27):
essentially.
It's an MRI.
It's not radiation and it is away to look at blood vessels in
more detail versus an MRI givesyou a very large picture, but an
MRA is really designed to lookspecifically at, um, the, the
blood vessel.
(07:48):
blood vessels.
And, um, you know, and that wasa very long answer.
But another misconception is,you know, a brain aneurysm is
really a vascular disease.
We're talking about the vesselsof the brain.
We're talking about anabnormality of, um, of the blood
vessels where you have, uh, a,um, pocket of the vessel that
(08:10):
gets stretched and can fill withblood.
And then if there's enoughpressure that can burst.
And, um, so it just happens thatit's in the brain when it
bursts.
There are other aneurysms, um,in your body.
Aortic aneurysms are probablythe most other, um, common
aneurysm, but this is really,um, a vascular disease.
(08:32):
So, um, I think that's justsomething for people to know.
And then the third lastmisconception I'll say is, um,
is people often ask and is whatis a hemorrhagic stroke?
So, when you say brain aneurysm,you know, the general person
wouldn't.
think of stroke, you know, even10, 11 years ago, when I found
(08:55):
out my cousin was in thehospital with a brain aneurysm,
I had no idea that was relatedto stroke.
And so, um, what, what it reallyis is a brain aneurysm is, is
when it ruptures, then if that,that will cause a flood of blood
into the brain.
And that is what.
And a hemorrhagic stroke is,it's that hemorrhaging of blood
(09:16):
versus an ischemic stroke is theblockage of blood to the brain.
So, um, so it's kind of, it's a,it's a type of stroke.
It's a smaller, um, uh, amountof general strokes.
Most strokes are ischemic, but,um, hemorrhagic, I believe are
about 13%, although I need tocheck that number.
Um, and it's just important toknow that all those signs of
(09:39):
stroke and it.
apply here and we should beaware of how to get to the right
medical facilities.
bindwaves-hosts (09:48):
Yeah, I think even though you said it was a
lot, I don't think it was a lot.
I think it's really importantinformation to be sharing with
the public.
And I think that's what we'reaiming with the podcast, right?
To be reaching people and, um,Making them aware of all these
situations.
I think it's really importantalso, um, what you were saying
(10:08):
about your aunt, um, you know,her saying, like, if I knew
this, if I knew this, I thinkthat's really important too,
because, like, as your cousin,she was 27, if I'm right, you
know, um, I was 28 when I had astroke.
So this is something that, like,It's so difficult for other
people to know when you're justso young.
(10:28):
They think it just would neverever happen to you, especially
when you're healthy and youdon't fit all the criteria that
people believe, um, should causethese difficult situations.
Um, it can really happen toanyone.
Um, and just being aware isreally the most important part
to be able to help.
Um, so right now, like I, I,When, like, I know when having
(10:54):
an aneurysm and, like, havingthe headaches and getting an MRA
is really important, um, like,how soon do you think you would
be able to know that when youprobably are having an aneurysm
or, like, Or is it will have ananeurysm?
I don't know too much about it.
So if my questions are silly,that's why.
erin-kreszl (11:15):
No, I think there's, um, you know, there's
signs of a non ruptured aneurysmand signs of a ruptured
aneurysm.
Um, when you have When you'reexperiencing that worst headache
of your life, uh, or thethunderclap headache, most
likely the aneurysm has rupturedand, um, that is when you need
(11:38):
to seek, um, medical techattention.
As quickly as possible.
It's kind of the, not old adage,but the stroke adage of time is,
time is brain.
And as fast as you can get tothe, um, the right, um, medical
facility, um, the better outcomeyou will have.
Um, the, you know, I'm, I'm notgonna lie.
(11:59):
The symptoms of unrapturedaneurysm are, are hard to
diagnose, but, um, you know,different type of headaches that
come on that you're not used to.
If you're a person that doesn'thave headaches, And you all of a
sudden start having them.
I would encourage you to get toyour primary care doctor.
I encourage you to see aneurologist.
Just, just explore the avenuesthat that could be.
(12:20):
Um, the, you still canexperience the, um, pain behind
the eyes.
You can experience nausea.
You can experience, um, youknow, drooping of the eyelid or,
uh, or seizures when, um,Aneurysm has not ruptured.
You know, it essentially couldthe pressure of the aneurysm
(12:40):
could be building and could bepressing on a certain certain
part of your brain.
I think it's a fine line, butthe best advice that we can give
to people and this is notaneurysm, not education.
This is just, you know, yourbody, you have to trust yourself
and you have to be okay.
With calling attention to it.
(13:01):
I think, unfortunately in the US and, um, in general, we are
very uncomfortable with seekingattention and making a big deal
about ourselves.
And I would just, you know,encourage people to trust
yourself, to advocate foryourself.
(13:22):
Um, I didn't mention I'm a momof two.
I have a six and eight year old.
I have a six year old who isvery medically complex and has a
genetic brain disease.
And it's astonishing to me howwell this country deals with
pediatric, um, concerns.
And when I walk into, every timeI walk into a doctor's office,
(13:43):
especially when my daughter was,was extremely little, they would
say, you know, we were saying,how do I know if she's having a
seizure?
And they would always say,you're the mom, you know.
Trust your instincts.
And, um, you know, I, I have allthe medical expertise regarding,
regarding this, but you're themom and I'm going to tell you,
you know, better than me.
(14:03):
that's true of yourself.
That is true of yourself whenyou're an adult.
And I think we need to take backthat ownership.
Yes, they have the medicalexpertise and they're going to
guide you, but you know,yourself, just like that mother
knows their dau, their, theirchild.
And, um, I just think thatthat's, again, this is across
all, all diseases, but I thinkwhat we, we're passionate about
(14:26):
spreading, um, The, um,awareness factors of aneurysms
and kind of alleviating some ofthat fear so that people will,
um, be okay getting that checkedout.
And I just, um, you know, that,that struck me that analogy of,
uh, we say moms know theirchildren.
They have that gut instinct.
Well, you know, yourself betterthan.
Uh, better than anybody, sotrust it.
bindwaves-hosts (14:48):
Erin, I think that is so true.
And we say that a lot here aswell.
I mean, listen to your body,listen to what it's saying.
If it's saying I'm tired, I'mrun down, I don't feel good.
Well, listen to it.
Stop.
Take a break, figure out what'sgoing on, and keep going.
Now, I have a kind of adifferent question.
I had a hemorrhagic strokemyself, and I was 38.
(15:09):
So, yeah, that's one reason wehave this podcast, because
people don't understand howyoung all this stuff happens.
But you've talked a lot aboutruptured aneurysm.
So, let's talk a little bitabout Unruptured aneurysms.
What, what can be done forthose?
I mean, obviously you don't wantthose to rupture and I'm
guessing, I'm not going toassume, I'm guessing there's
(15:30):
something that they can do tohopefully prevent or limit that
rupture.
erin-kreszl (15:38):
Yes.
Um, so, um, also important toknow, most, most aneurysms don't
rupture.
bindwaves-hosts (15:44):
Oh, okay.
erin-kreszl (15:45):
um, an aneurysm ruptures every 18 minutes.
That's 30, 000 a year.
Um, so the, the rate of rupturerelative to everyone who has an
aneurysm is lower.
Um, and most times you arefinding an aneurysm
incidentally.
People find them when they'repregnant, people find them when
they're, they're getting othertests done, um, they find them,
(16:08):
you know, when, um, they havecomplications of, you know,
we've had people find themthrough doing different
triathlons and, you know,something happens to them during
that and they have to go getsomething checked out and they
find them, um, so when you findthem, there are things that can
be done and that's, um, probablythe biggest, you know, if we
(16:28):
look at all of our, um, Um,Google Analytics on blogs that
people search for.
It's it continues to this day.
Our blog title, What do I do ifI have a non ruptured aneurysm
is for 8 years has been ourbiggest, um.
(16:49):
You know, sought after article.
And, um, so you need to find aneurologist, you need to get a
second opinion.
Um, and, and that's justsomething I personally feel
strongly about.
And, um, there are different,there's, um, endovascular
treatments you can do.
So that's going through eitheryour wrist or your groin, um, to
(17:12):
go up through the vessel into,um, the brain and they can, um,
do a coital aneurysm.
So it's like a spring, a littletiny spring that goes and fills,
um, fills the neck and the bulgeof the aneurysm so that more
blood cannot go into theaneurysm and cause it to, um,
(17:35):
continue to weaken and, and thenrupture.
Um, so that's probably the mostnon invasive common treatment
and there's lots of different,um, medical devices out there,
different types of coils andsprings and webs and, um, that
can address different types ofaneurysms that are, um, found
throughout the brain.
(17:55):
Um, now a large question is dowe need to treat?
And that's, um, a question thatis why I think second opinions
are so important because itreally comes down to the
experience of your doctor andwhat That, you know, what their
view is on to treat or nottreat.
And, um, and a lot of timesit's, it's, it's okay not to
(18:16):
treat.
And it really, it can come downto size.
It can come down to location,um, you know, the other
aneurysms, or if you just haveone.
Um, so yeah.
There is definitely a bigquestion.
A big point of discussion is themore and more advanced our
scanning technologies are andour awareness is, the more
(18:38):
conversations we're having onwhether or not to treat or not.
Um.
And then, um, so there's coilingand then, um, there's also flow
diversion, which is another, um,you know, it's, it's exactly
what it sounds like.
It's diverting the brainflow inyour brain away from that
weakened blood, blood vessel.
(18:59):
Um, so that's another option.
Um, and then, um, if you have a,um, more serious aneurysm that
cannot be treatedendovascularly, then you, um,
would do a craniotomy.
where you are clipping ananeurysm.
So again, rudimentary thinkabout it like a paper clip that
(19:19):
is, is.
or staple that is clipping thepart of the, the weakened blood
vessel so that more bloodcannot, um, go into the, the
aneurysm vault.
bindwaves-hosts (19:33):
Interesting.
I see that you have so muchinformation about this and, uh,
I think it's really, I thinkit's really good that you are
having this information becauseof the experience that you have
had with with a family member.
I think it's it's amazing.
It's really good.
Um, I am going to take a littletiny 2 minute break.
Maybe like 1 minute.
(19:53):
Give me a minute.
Just to remind our members, um,to our readers to just continue
following us on, um, Instagram.
On any of your social mediaplatforms, on Instagram, on
YouTube, um, every Thursdaywe'll continue to post in these
conversations.
And if you ever have anyquestions, just make sure to
contact us on any of your socialmedia platforms.
(20:14):
Um, I also think, um, back toyou, Emily, um, back to you,
Erin, um, all this informationcame from your experience that
you've had with your family, um,which kind of almost made you,
um, build or, um, create the BeeFoundation.
(20:34):
I know that you've been tellingus a lot of the information, but
can you tell us about thefoundation that you started
along with your sister?
erin-kreszl (20:41):
Yeah.
Um, so the BEE Foundation, um,like I said, we started it, um,
almost 11 years ago after welost our cousin, Jenny.
Um, My background was in, um,finance.
I spent, um, 15 years in theinvestment consulting industry,
but, um, I have an MBA with afocus on nonprofit management.
(21:04):
Um, and then my sister.
Um, is a chef and restaurantowner and in the Philadelphia
area, but also spent about, um,15 years in the biotech space
and across different areas of,um.
Healthcare, so I think those 2backgrounds along with our
(21:25):
passion to do something, um,fueled kind of a perfect storm
of the creation of thisorganization that, um.
You know, is now one of thesecond largest in the world that
focuses on brain aneurysmprevention.
And our primary goal when wefocused was, let's put all of
(21:45):
our efforts into building ascientific advisory board and
building a research grantprogram that solely looks at
prevention.
There had been so much greatadvances in the area of
treatment, all that I just spoketo you about, but, um, you know,
the area of prevention had was,um, was pretty much untouched or
just really at the surface thatwas being looked at.
(22:06):
And, um, you know, so we wantedto build a program and encourage
others in this field to do thesame and really invest in
prevention.
And, um.
When we look today at the workthat's being done in prevention,
it is amazing to see the growthover the past 10 years.
Um, you know, so much work isbeing done in the area of
(22:27):
genetics and, um, bloodbiomarkers, um, to really
understand.
We know there's a geneticcomponent.
Yale's been doing a longitudinalstudy for 30 plus years and
it's, It's well understood thatthere is, um, a component that
is related to your genes andpassing down through family, but
we need to identify which genesare, um, the markers to say that
(22:52):
you have an aneurysm or couldform one.
And so there's a lot more workbeing done in that area.
Um, there's also, um, a lot ofwork being done in, um, Genetics
and looking at inflammationmarkers, um, and even, um,
epigenetics that really takesinto account, um, the external
(23:14):
factors of a person and howthat, um, also plays into the,
um, makeup of their genes.
Um, so there's just a ton more.
focus and energy that has beenput into this field of, um, of
prevention.
And it's really exciting to see.
Um, so that's, that's kind ofwhere we started.
(23:35):
Um, and that was kind of whereour, um, onus was.
And then as we grew, we kind ofbuild out.
a lot of other areas.
We do a lot of work on advocacyon Capitol Hill.
Um, we do a lot of work with,um, um, support and that's kind
of how it came to find, um, thisamazing podcasting group of
(23:56):
people.
And, um, we're really proud ofour support services and that
the T, the TBF Hive that we havebuilt and, um, as well as our
ambassadors, um, that Jess ispart of.
And You know, we just have, I'mjust, every time I get on a
support group call, they're allvirtual.
(24:17):
I'm just amazed at theconnections and the
vulnerability and the trustthat, um, has been cultivated
within these groups.
Um, you know, as, as you bothknow.
You know, being a strokesurvivor yourself, kind of being
able to connect back to yourselfand connect back to your
(24:39):
community is kind of paramountin your recovery.
And so, um, those are kind ofthe facets of what the Bee
Foundation has become.
It's an organization that triesto prevent aneurysms, but it's
an organization that has beenable to build a family around.
Um, this disease that has beenso overlooked in our opinion,
(25:03):
um, over the past few decades.
bindwaves-hosts (25:06):
Erin, I totally agree with you when you say
community.
I mean, the brain injurycommunity is growing so much,
and I think it's so importantbecause the general public has
no clue, has so little, let mesay no clue, so little clue how
many people are affected bybrain injury.
and how many of us there are.
Now, we're getting close torunning out of time, but I have
one more question I want to ask.
(25:27):
We're going to make sure we putthe Bee Foundation in our
description so that people canfind you, but I also understand
you are working on a legislationcalled Ellie's Law.
Can you Just tell us a littlebit about that and how we can
help.
erin-kreszl (25:40):
Absolutely.
So, um, Ellie's Law is a billthat is in Congress.
Um, and it, um, for the firsttime this year has both, um,
bipartisan and bicameralsupport.
And, um, it, and so that meansit has support by the, um,
Republicans and Democrats, aswell as in the House and the
Senate.
(26:01):
And, um, it is a, um, bill thatasks for an additional 10
million per year, um, over fiveyears.
So a total of 50 million to beput into brain aneurysm research
at, um, NINDS, which is the, um,Neurologic, um, Division of NIH.
(26:24):
Um, the bill names six differentwomen who were affected, um, and
passed away from retroaneurysms.
It is the namesake of it isEllie Hilton.
Um, she was a 14 year old younggirl who Who, um, passed away
from a rupture on her first dayof high school, um, and her
(26:45):
father, um, and godfather wereinstrumental in, um, writing the
bill and advocating for it on,um, On Capitol Hill and, um,
Jenny Sadney, my cousin is alsolisted in there as well.
Um, but what we are trying to dois I, I don't know the exact
numbers, but I think as of rightnow we have about 63 co sponsors
(27:08):
of the bill in the House andseven in the Senate, and, um,
what you can do.
today is if you are affected byaneurysms or care passionately
about aneurysms, you can writeto your member of Congress and
ask them to be a co sponsor ofthe bill.
(27:29):
If you go to our website, youcan find an advocacy toolkit and
you can download a letter andyou can get a link to where you
can send in a letter to requestyour representative to support
the bill.
bindwaves-hosts (27:42):
Thank you so much, Erin.
I feel like we could keep goingand going and going because you
have so much knowledge and I'mloving this conversation.
Um, but we are running out oftime, but we really appreciate
your time.
We appreciate your patience atthe beginning of with all our
technology issues, but thank youso much for being here and don't
be surprised if we call on youagain.
erin-kreszl (28:02):
No problem.
Thank you so much for everythingyou're doing to bring advocacy
to the brain injury community.
It's so important.
bindwaves-hosts (28:08):
Yes, and agreed.
And just to keep you aware andall of our listeners aware, all
of your contact information,whether it be on social media,
um, and your website, uh, willbe available on the description,
um, somewhere below in our main,um, website.
And then obviously on Facebookand Instagram, uh, you will see
(28:28):
us and this episode.
So honestly, thank you so muchfor all of your information.
And thanks to our listeners forlistening us on a Thursday.
Um, if you would like to contactus, um, Carrie and I, um, the
podcast, uh, you can email us atbindwaves@thebind.org.
And obviously, as I mentionedearlier, Instagram is@bindwaves,
(28:50):
or visit our website, which isthebind.org/bindwaves.
And again, as Kezia mentionedearlier, don't forget while
you're listening or watching,um, to like, share, subscribe,
and hit notify if you'rewatching us on YouTube.
So, um, again, make sure youclick all those buttons.
(29:10):
Yep.
Every Thursday you'll see us.
So, until next time.
Until next time.
We hope you've enjoyed listeningto BIND Waves and continue to
support BIND and our non profitmission.
We support brain injurysurvivors as they reconnect into
the life, the community, andtheir workplace.
And we couldn't do that withoutgreat listeners like you.
We appreciate each and every oneof you.
(29:31):
Continue watching.
Until next time.
Until next time.
Instrumental
bindwaves-hosts (00:10):
Hi, my name is Kezia.
I'm a stroke survivor and memberof BIND.
And hi, I'm Carrie, also astroke survivor and a member of
BIND.
And today we're interested,we're talking to Erin Kressel
because September is BrainAneurysm Awareness Month, and
Erin is the co founder andexecutive director of the Bee
Foundation, which aneurysmprevention.
(00:33):
So welcome, Erin.
erin-kreszl (00:36):
Hi, how are you?
It's wonderful to be here today.
Brian (00:40):
Welcome to BINDWAVES, the official podcast of the Brain
Injury Network of Dallas.
I'm Brian White, BIND'sExecutive Director.
On each episode, we'll beproviding insight into the brain
injury community.
We'll be talking to members andprofessionals regarding their
stories and the important roleof BIND's Clubhouse.
We work as a team to inspirehope, community, and a sense of
(01:03):
purpose to survivors,caregivers, and the public.
Thank you for tuning intoBINDWAVES.
BINDWAVES Let's get on with theshow.
bindwaves-hosts (01:12):
Great, thank you so much.
Will you just tell us a littlebit about yourself?
erin-kreszl (01:16):
Absolutely.
My name is Erin Kressel and I'mthe co founder and executive
director of the Bee Foundation.
My sister Christine and Ifounded the organization almost
11 years ago after we lost mycousin Jenny to a brain aneurysm
rupture at the age of 27 in2013.
Um, so we started the foundationwith the sole goal of trying to
(01:41):
prevent brain aneurysms and kindof grown to be one of the
leading organizations in thefield of brain aneurysm
prevention.
bindwaves-hosts (01:52):
Oh, that's, that's really cool.
I actually, um, we did a littlebit of research of you and, um,
I think like many of ourlisteners, we, we haven't met
you in person and it's reallycool that we're doing it
virtually, but hearing that itwas you and your sister that
started the organization andthat you're doing it after, you
know, having a family loss,it's, it's very, um, yeah,
(02:15):
strengthening and really, reallycool, really.
Um, but of course, like us andmore specifically me and some of
our listeners, we don't really,um, know too much about
aneurysms.
So if you can kind of explain tous like a little bit of the,
what you know about aneurysms,that would be very helpful.
erin-kreszl (02:35):
Sure.
Um, so the, the statisticsaround brain aneurysms are, um,
relatively, uh, unknown to thegeneral public.
I think what most people arestruck by is that actually 1 in
50 people have a brain aneurysm.
So that's about, um, um, 6million people, a little more
(02:56):
than about 6.
7 million of the U.
S.
population.
It's a disease that can affectany person.
It's primarily adults, but itdoes happen in children, but it
really can affect anybody.
And the most common ages reallyare Between 40 to 60, it
(03:19):
impacts, um, Latinos and Blacksat about two times as, as the,
um, general population and, um,women are actually more at risk
as well.
Um, the.
You know, a lot of times, brainaneurysms scare people.
It's really hard to identifythem prior to rupture.
Um, and, um, but what is our, iskind of the, the key warning
(03:44):
sign is people have, um, whatthey generally call the worst
headache of their life.
Um, it's what's known as athunderclap headache.
Um, and that is a sign that youdo have a rupture.
Um, but there are other, um,signs that, that can be
experienced.
Um, a lot of them are similar toischemic stroke symptoms and,
(04:05):
um, they would be, um, kind ofpain coming through the eyes,
severe neck pain, um, droopingof your eyelid.
Um, and general, um,disorientation or even, um, a
seizure.
And, you know, I think the, thebest piece of advice that a lot
(04:26):
of our doctors have told us isif you are experiencing a
headache that is different.
Then any, anything else on thepain scale, you know, if you're,
if you're experiencing aheadache, that's on a one to 10
pain scale, you're saying 11,you need to get yourself to an
emergency room and, um, ask fora, um, CT scan or an, um, MRA or
(04:49):
an angiogram or spinal tap.
bindwaves-hosts (04:52):
Okay, well, that's good to know.
Um, that's crazy statistics,though.
I kind of knew them, but I don'tthink the general, like you
said, the general public doesn'tknow, and that's, that's kind of
what's crazy.
But what maybe also are somemisconceptions about brain
aneurysms?
erin-kreszl (05:08):
Um, I think the biggest misconception that we
try and combat is age.
A lot of people generally thinkof stroke as something that, um,
or an aneurysm as something thatwould affect an older person.
Um, you know, half of the deathsworldwide are from aneurysms are
people under the age of 50.
Um, so, you know, when my aunt,when my cousin passed away, it
(05:31):
was something my aunt, alwayssaid is like, if I had seen a
billboard, if I had heard amessage on the radio that these
stroke symptoms and somethinglike this could happen to my 27
year old daughter that wasotherwise healthy, um, you know,
I'm not sure it would havechanged the scenario, but she
just wished she knew that.
And, you know, the, um, general,risk factors of brain aneurysms
(05:55):
that are in the literature andonline are, um, you know,
smoking and drug use and, um,high blood pressure, um,
experience with family memberswith kidney disease.
And in general, the people wemeet, the people we know did not
have those, um, risk factors.
And I think that's, that's,what's really hard.
(06:17):
To reconcile is you haveotherwise healthy individuals
and young people who are in theprime of their life, not showing
any signs that would would provethat they have a ruptured
aneurysm that leads to ahemorrhagic stroke.
And so, um, those misconceptionsare what we are trying to
(06:40):
communicate to the broad publicand also to medical, um,
patients.
People in the healthcare field,such as EMTs and first
responders and emergencymedicine doctors, and to know
that this is something that theyshould at least be aware of.
look at if you're experiencingthe worst headache of your life,
(07:03):
get a scan, and also, um, askthe questions about family
history.
If you have, um, two or morepeople in your family, then, um,
it is said that you are, have ahigher likelihood to also have
an aneurysm.
And so, you know, if you havetwo or more people, you are
eligible by insurance to get aMRA, which is, um, an MRA is
(07:27):
essentially.
It's an MRI.
It's not radiation and it is away to look at blood vessels in
more detail versus an MRI givesyou a very large picture, but an
MRA is really designed to lookspecifically at, um, the, the
blood vessel.
(07:48):
blood vessels.
And, um, you know, and that wasa very long answer.
But another misconception is,you know, a brain aneurysm is
really a vascular disease.
We're talking about the vesselsof the brain.
We're talking about anabnormality of, um, of the blood
vessels where you have, uh, a,um, pocket of the vessel that
(08:10):
gets stretched and can fill withblood.
And then if there's enoughpressure that can burst.
And, um, so it just happens thatit's in the brain when it
bursts.
There are other aneurysms, um,in your body.
Aortic aneurysms are probablythe most other, um, common
aneurysm, but this is really,um, a vascular disease.
(08:32):
So, um, I think that's justsomething for people to know.
And then the third lastmisconception I'll say is, um,
is people often ask and is whatis a hemorrhagic stroke?
So, when you say brain aneurysm,you know, the general person
wouldn't.
think of stroke, you know, even10, 11 years ago, when I found
(08:55):
out my cousin was in thehospital with a brain aneurysm,
I had no idea that was relatedto stroke.
And so, um, what, what it reallyis is a brain aneurysm is, is
when it ruptures, then if that,that will cause a flood of blood
into the brain.
And that is what.
And a hemorrhagic stroke is,it's that hemorrhaging of blood
(09:16):
versus an ischemic stroke is theblockage of blood to the brain.
So, um, so it's kind of, it's a,it's a type of stroke.
It's a smaller, um, uh, amountof general strokes.
Most strokes are ischemic, but,um, hemorrhagic, I believe are
about 13%, although I need tocheck that number.
Um, and it's just important toknow that all those signs of
(09:39):
stroke and it.
apply here and we should beaware of how to get to the right
medical facilities.
bindwaves-hosts (09:48):
Yeah, I think even though you said it was a
lot, I don't think it was a lot.
I think it's really importantinformation to be sharing with
the public.
And I think that's what we'reaiming with the podcast, right?
To be reaching people and, um,Making them aware of all these
situations.
I think it's really importantalso, um, what you were saying
(10:08):
about your aunt, um, you know,her saying, like, if I knew
this, if I knew this, I thinkthat's really important too,
because, like, as your cousin,she was 27, if I'm right, you
know, um, I was 28 when I had astroke.
So this is something that, like,It's so difficult for other
people to know when you're justso young.
(10:28):
They think it just would neverever happen to you, especially
when you're healthy and youdon't fit all the criteria that
people believe, um, should causethese difficult situations.
Um, it can really happen toanyone.
Um, and just being aware isreally the most important part
to be able to help.
Um, so right now, like I, I,When, like, I know when having
(10:54):
an aneurysm and, like, havingthe headaches and getting an MRA
is really important, um, like,how soon do you think you would
be able to know that when youprobably are having an aneurysm
or, like, Or is it will have ananeurysm?
I don't know too much about it.
So if my questions are silly,that's why.
erin-kreszl (11:15):
No, I think there's, um, you know, there's
signs of a non ruptured aneurysmand signs of a ruptured
aneurysm.
Um, when you have When you'reexperiencing that worst headache
of your life, uh, or thethunderclap headache, most
likely the aneurysm has rupturedand, um, that is when you need
(11:38):
to seek, um, medical techattention.
As quickly as possible.
It's kind of the, not old adage,but the stroke adage of time is,
time is brain.
And as fast as you can get tothe, um, the right, um, medical
facility, um, the better outcomeyou will have.
Um, the, you know, I'm, I'm notgonna lie.
(11:59):
The symptoms of unrapturedaneurysm are, are hard to
diagnose, but, um, you know,different type of headaches that
come on that you're not used to.
If you're a person that doesn'thave headaches, And you all of a
sudden start having them.
I would encourage you to get toyour primary care doctor.
I encourage you to see aneurologist.
Just, just explore the avenuesthat that could be.
(12:20):
Um, the, you still canexperience the, um, pain behind
the eyes.
You can experience nausea.
You can experience, um, youknow, drooping of the eyelid or,
uh, or seizures when, um,Aneurysm has not ruptured.
You know, it essentially couldthe pressure of the aneurysm
(12:40):
could be building and could bepressing on a certain certain
part of your brain.
I think it's a fine line, butthe best advice that we can give
to people and this is notaneurysm, not education.
This is just, you know, yourbody, you have to trust yourself
and you have to be okay.
With calling attention to it.
(13:01):
I think, unfortunately in the US and, um, in general, we are
very uncomfortable with seekingattention and making a big deal
about ourselves.
And I would just, you know,encourage people to trust
yourself, to advocate foryourself.
(13:22):
Um, I didn't mention I'm a momof two.
I have a six and eight year old.
I have a six year old who isvery medically complex and has a
genetic brain disease.
And it's astonishing to me howwell this country deals with
pediatric, um, concerns.
And when I walk into, every timeI walk into a doctor's office,
(13:43):
especially when my daughter was,was extremely little, they would
say, you know, we were saying,how do I know if she's having a
seizure?
And they would always say,you're the mom, you know.
Trust your instincts.
And, um, you know, I, I have allthe medical expertise regarding,
regarding this, but you're themom and I'm going to tell you,
you know, better than me.
(14:03):
that's true of yourself.
That is true of yourself whenyou're an adult.
And I think we need to take backthat ownership.
Yes, they have the medicalexpertise and they're going to
guide you, but you know,yourself, just like that mother
knows their dau, their, theirchild.
And, um, I just think thatthat's, again, this is across
all, all diseases, but I thinkwhat we, we're passionate about
(14:26):
spreading, um, The, um,awareness factors of aneurysms
and kind of alleviating some ofthat fear so that people will,
um, be okay getting that checkedout.
And I just, um, you know, that,that struck me that analogy of,
uh, we say moms know theirchildren.
They have that gut instinct.
Well, you know, yourself betterthan.
Uh, better than anybody, sotrust it.
bindwaves-hosts (14:48):
Erin, I think that is so true.
And we say that a lot here aswell.
I mean, listen to your body,listen to what it's saying.
If it's saying I'm tired, I'mrun down, I don't feel good.
Well, listen to it.
Stop.
Take a break, figure out what'sgoing on, and keep going.
Now, I have a kind of adifferent question.
I had a hemorrhagic strokemyself, and I was 38.
(15:09):
So, yeah, that's one reason wehave this podcast, because
people don't understand howyoung all this stuff happens.
But you've talked a lot aboutruptured aneurysm.
So, let's talk a little bitabout Unruptured aneurysms.
What, what can be done forthose?
I mean, obviously you don't wantthose to rupture and I'm
guessing, I'm not going toassume, I'm guessing there's
(15:30):
something that they can do tohopefully prevent or limit that
rupture.
erin-kreszl (15:38):
Yes.
Um, so, um, also important toknow, most, most aneurysms don't
rupture.
bindwaves-hosts (15:44):
Oh, okay.
erin-kreszl (15:45):
um, an aneurysm ruptures every 18 minutes.
That's 30, 000 a year.
Um, so the, the rate of rupturerelative to everyone who has an
aneurysm is lower.
Um, and most times you arefinding an aneurysm
incidentally.
People find them when they'repregnant, people find them when
they're, they're getting othertests done, um, they find them,
(16:08):
you know, when, um, they havecomplications of, you know,
we've had people find themthrough doing different
triathlons and, you know,something happens to them during
that and they have to go getsomething checked out and they
find them, um, so when you findthem, there are things that can
be done and that's, um, probablythe biggest, you know, if we
(16:28):
look at all of our, um, Um,Google Analytics on blogs that
people search for.
It's it continues to this day.
Our blog title, What do I do ifI have a non ruptured aneurysm
is for 8 years has been ourbiggest, um.
(16:49):
You know, sought after article.
And, um, so you need to find aneurologist, you need to get a
second opinion.
Um, and, and that's justsomething I personally feel
strongly about.
And, um, there are different,there's, um, endovascular
treatments you can do.
So that's going through eitheryour wrist or your groin, um, to
(17:12):
go up through the vessel into,um, the brain and they can, um,
do a coital aneurysm.
So it's like a spring, a littletiny spring that goes and fills,
um, fills the neck and the bulgeof the aneurysm so that more
blood cannot go into theaneurysm and cause it to, um,
(17:35):
continue to weaken and, and thenrupture.
Um, so that's probably the mostnon invasive common treatment
and there's lots of different,um, medical devices out there,
different types of coils andsprings and webs and, um, that
can address different types ofaneurysms that are, um, found
throughout the brain.
(17:55):
Um, now a large question is dowe need to treat?
And that's, um, a question thatis why I think second opinions
are so important because itreally comes down to the
experience of your doctor andwhat That, you know, what their
view is on to treat or nottreat.
And, um, and a lot of timesit's, it's, it's okay not to
(18:16):
treat.
And it really, it can come downto size.
It can come down to location,um, you know, the other
aneurysms, or if you just haveone.
Um, so yeah.
There is definitely a bigquestion.
A big point of discussion is themore and more advanced our
scanning technologies are andour awareness is, the more
(18:38):
conversations we're having onwhether or not to treat or not.
Um.
And then, um, so there's coilingand then, um, there's also flow
diversion, which is another, um,you know, it's, it's exactly
what it sounds like.
It's diverting the brainflow inyour brain away from that
weakened blood, blood vessel.
(18:59):
Um, so that's another option.
Um, and then, um, if you have a,um, more serious aneurysm that
cannot be treatedendovascularly, then you, um,
would do a craniotomy.
where you are clipping ananeurysm.
So again, rudimentary thinkabout it like a paper clip that
(19:19):
is, is.
or staple that is clipping thepart of the, the weakened blood
vessel so that more bloodcannot, um, go into the, the
aneurysm vault.
bindwaves-hosts (19:33):
Interesting.
I see that you have so muchinformation about this and, uh,
I think it's really, I thinkit's really good that you are
having this information becauseof the experience that you have
had with with a family member.
I think it's it's amazing.
It's really good.
Um, I am going to take a littletiny 2 minute break.
Maybe like 1 minute.
(19:53):
Give me a minute.
Just to remind our members, um,to our readers to just continue
following us on, um, Instagram.
On any of your social mediaplatforms, on Instagram, on
YouTube, um, every Thursdaywe'll continue to post in these
conversations.
And if you ever have anyquestions, just make sure to
contact us on any of your socialmedia platforms.
(20:14):
Um, I also think, um, back toyou, Emily, um, back to you,
Erin, um, all this informationcame from your experience that
you've had with your family, um,which kind of almost made you,
um, build or, um, create the BeeFoundation.
(20:34):
I know that you've been tellingus a lot of the information, but
can you tell us about thefoundation that you started
along with your sister?
erin-kreszl (20:41):
Yeah.
Um, so the BEE Foundation, um,like I said, we started it, um,
almost 11 years ago after welost our cousin, Jenny.
Um, My background was in, um,finance.
I spent, um, 15 years in theinvestment consulting industry,
but, um, I have an MBA with afocus on nonprofit management.
(21:04):
Um, and then my sister.
Um, is a chef and restaurantowner and in the Philadelphia
area, but also spent about, um,15 years in the biotech space
and across different areas of,um.
Healthcare, so I think those 2backgrounds along with our
(21:25):
passion to do something, um,fueled kind of a perfect storm
of the creation of thisorganization that, um.
You know, is now one of thesecond largest in the world that
focuses on brain aneurysmprevention.
And our primary goal when wefocused was, let's put all of
(21:45):
our efforts into building ascientific advisory board and
building a research grantprogram that solely looks at
prevention.
There had been so much greatadvances in the area of
treatment, all that I just spoketo you about, but, um, you know,
the area of prevention had was,um, was pretty much untouched or
just really at the surface thatwas being looked at.
(22:06):
And, um, you know, so we wantedto build a program and encourage
others in this field to do thesame and really invest in
prevention.
And, um.
When we look today at the workthat's being done in prevention,
it is amazing to see the growthover the past 10 years.
Um, you know, so much work isbeing done in the area of
(22:27):
genetics and, um, bloodbiomarkers, um, to really
understand.
We know there's a geneticcomponent.
Yale's been doing a longitudinalstudy for 30 plus years and
it's, It's well understood thatthere is, um, a component that
is related to your genes andpassing down through family, but
we need to identify which genesare, um, the markers to say that
(22:52):
you have an aneurysm or couldform one.
And so there's a lot more workbeing done in that area.
Um, there's also, um, a lot ofwork being done in, um, Genetics
and looking at inflammationmarkers, um, and even, um,
epigenetics that really takesinto account, um, the external
(23:14):
factors of a person and howthat, um, also plays into the,
um, makeup of their genes.
Um, so there's just a ton more.
focus and energy that has beenput into this field of, um, of
prevention.
And it's really exciting to see.
Um, so that's, that's kind ofwhere we started.
(23:35):
Um, and that was kind of whereour, um, onus was.
And then as we grew, we kind ofbuild out.
a lot of other areas.
We do a lot of work on advocacyon Capitol Hill.
Um, we do a lot of work with,um, um, support and that's kind
of how it came to find, um, thisamazing podcasting group of
(23:56):
people.
And, um, we're really proud ofour support services and that
the T, the TBF Hive that we havebuilt and, um, as well as our
ambassadors, um, that Jess ispart of.
And You know, we just have, I'mjust, every time I get on a
support group call, they're allvirtual.
(24:17):
I'm just amazed at theconnections and the
vulnerability and the trustthat, um, has been cultivated
within these groups.
Um, you know, as, as you bothknow.
You know, being a strokesurvivor yourself, kind of being
able to connect back to yourselfand connect back to your
(24:39):
community is kind of paramountin your recovery.
And so, um, those are kind ofthe facets of what the Bee
Foundation has become.
It's an organization that triesto prevent aneurysms, but it's
an organization that has beenable to build a family around.
Um, this disease that has beenso overlooked in our opinion,
(25:03):
um, over the past few decades.
bindwaves-hosts (25:06):
Erin, I totally agree with you when you say
community.
I mean, the brain injurycommunity is growing so much,
and I think it's so importantbecause the general public has
no clue, has so little, let mesay no clue, so little clue how
many people are affected bybrain injury.
and how many of us there are.
Now, we're getting close torunning out of time, but I have
one more question I want to ask.
(25:27):
We're going to make sure we putthe Bee Foundation in our
description so that people canfind you, but I also understand
you are working on a legislationcalled Ellie's Law.
Can you Just tell us a littlebit about that and how we can
help.
erin-kreszl (25:40):
Absolutely.
So, um, Ellie's Law is a billthat is in Congress.
Um, and it, um, for the firsttime this year has both, um,
bipartisan and bicameralsupport.
And, um, it, and so that meansit has support by the, um,
Republicans and Democrats, aswell as in the House and the
Senate.
(26:01):
And, um, it is a, um, bill thatasks for an additional 10
million per year, um, over fiveyears.
So a total of 50 million to beput into brain aneurysm research
at, um, NINDS, which is the, um,Neurologic, um, Division of NIH.
(26:24):
Um, the bill names six differentwomen who were affected, um, and
passed away from retroaneurysms.
It is the namesake of it isEllie Hilton.
Um, she was a 14 year old younggirl who Who, um, passed away
from a rupture on her first dayof high school, um, and her
(26:45):
father, um, and godfather wereinstrumental in, um, writing the
bill and advocating for it on,um, On Capitol Hill and, um,
Jenny Sadney, my cousin is alsolisted in there as well.
Um, but what we are trying to dois I, I don't know the exact
numbers, but I think as of rightnow we have about 63 co sponsors
(27:08):
of the bill in the House andseven in the Senate, and, um,
what you can do.
today is if you are affected byaneurysms or care passionately
about aneurysms, you can writeto your member of Congress and
ask them to be a co sponsor ofthe bill.
(27:29):
If you go to our website, youcan find an advocacy toolkit and
you can download a letter andyou can get a link to where you
can send in a letter to requestyour representative to support
the bill.
bindwaves-hosts (27:42):
Thank you so much, Erin.
I feel like we could keep goingand going and going because you
have so much knowledge and I'mloving this conversation.
Um, but we are running out oftime, but we really appreciate
your time.
We appreciate your patience atthe beginning of with all our
technology issues, but thank youso much for being here and don't
be surprised if we call on youagain.
erin-kreszl (28:02):
No problem.
Thank you so much for everythingyou're doing to bring advocacy
to the brain injury community.
It's so important.
bindwaves-hosts (28:08):
Yes, and agreed.
And just to keep you aware andall of our listeners aware, all
of your contact information,whether it be on social media,
um, and your website, uh, willbe available on the description,
um, somewhere below in our main,um, website.
And then obviously on Facebookand Instagram, uh, you will see
(28:28):
us and this episode.
So honestly, thank you so muchfor all of your information.
And thanks to our listeners forlistening us on a Thursday.
Um, if you would like to contactus, um, Carrie and I, um, the
podcast, uh, you can email us atbindwaves@thebind.org.
And obviously, as I mentionedearlier, Instagram is@bindwaves,
(28:50):
or visit our website, which isthebind.org/bindwaves.
And again, as Kezia mentionedearlier, don't forget while
you're listening or watching,um, to like, share, subscribe,
and hit notify if you'rewatching us on YouTube.
So, um, again, make sure youclick all those buttons.
(29:10):
Yep.
Every Thursday you'll see us.
So, until next time.
Until next time.
We hope you've enjoyed listeningto BIND Waves and continue to
support BIND and our non profitmission.
We support brain injurysurvivors as they reconnect into
the life, the community, andtheir workplace.
And we couldn't do that withoutgreat listeners like you.
We appreciate each and every oneof you.
(29:31):
Continue watching.
Until next time.
Until next time.
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