February 22, 2023 • 20 mins
Eleni Tsigas, CEO of the Preeclampsia Foundation, talks about her personal experiences that drive her passion. Eleni further discusses the important work the Preeclampsia Foundation is engaged in, including the 10th anniversary of the Preeclampsia Registry and how it is impacting research. Also, covered is the future of maternal care and the Preeclampsia Foundation’s impact on it, including the growing Cuff Kit program, and the new initiative, the Take 10 campaign. Launching soon, Take 10 will work with partners to increase diverse representation of all people in the registry.
The Preeclampsia Foundation was designed to be a “place to come to, to get reliable information, to find a community that [people] can connect with…”
We are a “collaborator, a partner…to work hand-in-hand with you to make the world a better place for those who experienced hypotensive disorders of pregnancy”
There are many ways to get involved: Become a MoMMAs Voices Patient Family Partner, get involved with Promise Walks, volunteer with the foundation, or even do DIY fundraisers.
Contact the Preeclampsia Foundation and we will try to help match you with opportunities “where you are.”
About MoMMAs Voices
MoMMAs Voices (Maternal Mortality & Morbidity Advocates) is the first-ever maternal health patient advocates program bringing together real patient and family voices. We're made up of dozens of maternal health organizations who represent all types of maternal health conditions, as well as cross-cutting topics like maternal mental health, racial equity, healthcare delivery, and patient-provider partnership. We sit at the center of maternal health improvements, connecting and training patients with lived experiences, providers, quality improvement leaders, researchers, and policymakers to move forward improvements in maternal care. We are a program of the Preeclampsia Foundation.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nicole (00:01):
Hello, and welcome to today's episode of The Power of
MoMMAs Voices Podcast, wherewe'll be sitting down with two
time severe preeclampsiasurvivor and chief Executive
Officer of the PreeclampsiaFoundation Eleni Tsigas.
MoMMAs Voices is a program ofthe Preeclampsia Foundation, and
as you heard about in our firstepisode, it began from
recognizing that changingmaternal healthcare in the US
(00:22):
started by bringing everybodytogether.
All types of patients and theirfamilies have been affected by
conditions like pre-eclampsiaand so many others.
Eleni, thank you for being herewith us today.
Obviously, we began this Powerof MoMMAs Voices Podcast to help
support patients with livedexperiences.
So would you start by tellingus just a little bit about what
brought you to your work withthe preeclampsia foundation?
Eleni (00:45):
Well, that's an old story because my experience with
pre-eclampsia happened, as Ilike to say, before the turn of
the century.
Back in 1998 and 99, I did havesevere pre-eclampsia twice.
The first time unfortunately welost our daughter, our first
born I was 29 weeks pregnant andit was a whole different world
(01:11):
back then.
In some ways, and in other wayswe're still hearing the same
stories, which is truly sad.
To summarize my preeclampsiajourney, it started with the
loss of my first child, gettingpregnant again and having severe
preeclampsia with my secondchild.
But in that one I was beingseen by an MFM and felt and
(01:32):
looked like a completelydifferent pathway where I was
carefully monitored.
Unfortunately, my son didsuffer from growth restrictions,
so he ended up in the NICU fora couple weeks.
I was in the hospital for acouple weeks before he was born.
He was in the NICU for a coupleweeks after he was born.
And then crazy that we were, wejust really didn't want an only
(01:54):
child and went for a thirdpregnancy.
And in that one I was seen notjust by an MFM, but kind of a
super specialist inpreeclampsia.
We did some at that time whatwere more unorthodox measures to
try to prevent me from gettingpreeclampsia a third time.
And it worked.
My son was born at 39 weeksweighing eight pounds, twice as
(02:15):
big as his brother.
I feel like through all thosethree pregnancies I had the full
gamut of every experience youcould possibly have, including
nearly losing my own life in myfirst pregnancy where I had all
the classic issues of my organsshutting down and I had an
(02:35):
undetected placental abruption,so I lost half my blood volume
when I delivered my daughter.
My own personal experiencebegan before the Preeclampsia
Foundation was even founded.
And so I didn't have thatresource through my first two
pregnancies, but I think it'sbecause of that I am so
(02:56):
passionate about those who areaffected, having a place that
they can come to get reliableinformation, to find a community
that they can connect with.
A lot of people don'tnecessarily have the kinds of
support systems that I had inplace.
And you see the result of thatin just how mentally devastating
this is on all levels.
Nicole (03:20):
That's something that you and I share unfortunately.
We're still seeing peoplecoming to us that have lost
babies because of preeclampsia.
Even though our experiences arelike you said, preterm of the
century or mine's not quite thatfar, but still it's not recent.
It's still things that we hearabout today.
I'm glad to hear that you foundthe Preeclampsia Foundation and
I did as well when we needed itand when we were able to use
(03:43):
that to kind of bring that, thatmeaning forward.
Let's talk a little bit aboutlike, what's happening in the
present.
As most of our listeners areprobably aware, we have serious
maternal health crisis here inthe US which has only recently
been brought forward to thenational attention, and it just
keeps having light shined uponit.
What moment did you first startto see healthcare providers and
(04:04):
policy makers starting to takethis work that the Preeclampsia
Foundation does and their otherpartners very seriously?
Eleni (04:12):
I think there were a few inflection points.
For preeclampsia specifically Ifeel one of our major
inflection points was around2012, 2013 when Dr.
Jim Martin, who unfortunatelywe lost last year, but when he
became president of ACOG, hemade it his passion to elevate
(04:36):
preeclampsia in that issue.
As an organization focused onpreeclampsia, that was a key
point in a lot of the progressthat we started to make around
the importance of patienteducation and developing
guidelines and protocols.
But on a bigger level, which isreally what we're trying to do
now with MoMMAs Voices iselevating the maternal health
(04:57):
experience overall.
I really think that one of themain inflection points was when
we finally got major media tostart investigating this
problem.
While we did a lot of work toget the Preventing Maternal
Death Act passed, a lot of thatwas driven by the ProPublica and
the USA Today.
That really brought this wholeissue out of the shadows.
(05:21):
Those series started tohighlight well-educated women
who had access to resources andto good healthcare, and they
were dying in pregnancy.
All of a sudden I think peoplestarted to realize this isn't
just an issue around access tohealthcare or the
disenfranchised having theseissues happening to them.
(05:42):
These articles really broughtout the fact that this is a
widespread issue.
And then once you start peelingback the layers and you realize
not only is a widespread issue,but the disproportional burden
of that issue on folks who don'thave access to healthcare or
(06:02):
have less access to healthcareor are living in rural areas of
the country or we're sufferingfrom racial and ethnic
disparities on this issue.
And just the extraordinaryburden on certain populations.
All of that came to light whenmedia started paying attention
to this, and we were able to getthe Preventing Maternal Deaths
(06:23):
Act passed, which really shoredup the data collection part of
this because it allowed then theresources and allowed the
states to focus on collectingdata about the moms who were
dying.
That gave us the fuel we neededto understand where the
problem's happening, what arethose preventable measures?
(06:45):
What are those key areas thatwe really need to be focusing
on.
As a result of that, I thinkthat we're just now seeing so
many promising steps andmeasures being taken.
Nicole (06:58):
What Preeclampsia Foundation program, besides
Mama's Voices of course, has youmost excited for 2023?
Eleni (07:05):
I will say for 2023 in particular, there's a couple of
areas.
The 10th anniversary of thepreeclampsia registry, which is
a research asset that we created10 years ago, and under that
umbrella of our role in tryingto catalyze research by funding
studies, but we also wanted toutilize this vast community of
(07:31):
survivors that we're workingwith to collect their data and
provide that in a wayinvestigators can use in their
studies.
We provided the data needed fora number of different studies.
Everything from genetic studiesthat help us understand some of
the genetic underpinnings ofthis disorder, as well as
(07:52):
qualitative studies that help tocollate all of the information
that we as survivors know aboutour experience and collate it in
a way that investigators canthen report on it and identify
those experiences that we haveas patients.
Investigators are veryevidence-based, and even though
(08:13):
we know as survivors, like ourstories, our experiences can be
super instructive.
For investigators who want touse that information, we can
package it for them in a waythat combines it with other
stories, and we start seeingtrends and patterns and things
that aren't just outliers,right?
It's not like this justhappened to Eleni, or this just
(08:35):
happened to Nicole.
No, it happens to many womenand pay attention.
We've got the data to to showfor it.
The registry has allowed us todo with what we call qualitative
research to help investigatorsunderstand the preeclamptic
experience and really representthat on behalf of patients and
survivors.
(08:55):
The registry itself, one of thethings that we're launching in
2023 is a Take 10 campaign, andthat's really intended to focus
on the enormous need to increasediverse representation of all
women in the registry.
We know that it will affect thescience if we're not all
equally represented in theregistry.
(09:16):
We're working with a number ofdifferent partners who work,
especially with Bipoc women toincrease their representation in
research.
Nicole (09:25):
That's always just so important on having that patient
voice, patient participation.
I know you mentioned just onone thing there, but we also are
very interested in havingpatients help design those
projects as well and not just bethe subject.
That's sometimes a novelthought, but we're getting there
and we do see improvements inthat happening.
What can be done to improve theway preeclampsia care is
(09:46):
managed here in the US?
Eleni (09:50):
That could be like a five part series just by itself,
Nicole.
But I would say look at some ofthe issues we're addressing.
One is a term that we've coinedcalled the three Deadly Ds.
This is where the patient voiceis so instructive because as
you hear, 20 years into thisprocess, we have heard tens of
(10:10):
thousands of stories frompreeclampsia survivors, and one
of the things that tends to getrepeated is this idea that
patients are experiencing delaysin getting the care that they
need.
They might be in denial thatsomething bad is happening.
Why patient education is soimportant.
Here's what you need to payattention to and don't ignore it
(10:32):
and don't be like supermom andall these things.
So there's a lot of denial.
We often will talk about thenurses or doctors or healthcare
providers denying what they seein front of them.
And that definitely is part ofit, but it's also on us to not
deny what we're feeling and whatexperiencing.
That can be deadly and we wereworking to overcome that.
(10:53):
The last thing is dismissal,and that's where we try to have
our voices heard.
We're trying to report what'sgoing on with us and we're just
not being heard, dismissed,we're being, sent off in a
different direction becausethat's just normal pregnancy.
I do think on all of those, thetide is turning.
(11:14):
I mean, we've worked with theCDC to get the Hear Her campaign
launched.
There are a number ofindividual programs.
We're working with Texas, bythe way that's something else
I'm super excited for 2023 isworking with one of the big five
baby states, which is Texas anda state that's gotten a lot of
notorious attention for nothaving really great maternal
health outcomes, and we are justprivileged to be working super
(11:37):
closely with the state to deploythe hypertension, severe
hypertension bundle or protocolsto turn that around in that
state.
Denial and delays are thingsthat we are working to overcome
when it comes to preeclampsia.
The other thing I'm just gonnamention real quickly, and I
would love to be able to rewindthis podcast like five years
(11:59):
from now and go, wow Eleni wasso prescient.
She looked into her crystalball and knew where all this was
going.
I'd love to say that's true.
In the future, but I thinkincreasingly we're recognizing
that for preeclampsia to besolved, it requires a precision
medicine approach.
We're focusing a lot on thehypertension part of
preeclampsia, but we also needto focus a lot on the placental
(12:23):
dysfunction.
What's breaking down in theplacenta.
Some people get preeclampsiabecause of all the
cardiovascular part of it, andother people get preeclampsia
because of the placentaldysfunction part of it.
We need to get to a place wherewe very precisely diagnose what
kind of preeclampsia you'regetting, why you are getting it,
(12:44):
and then customize thetreatment accordingly because
one size fits all ain't gonnawork.
We're seeing that over and overagain.
So I'm super excited because Ithink that a lot of the research
that's happening in academicinstitutions and even a lot of
the companies that are startingto invest in this space are
realizing that that precisionmedicine approach is what we
(13:07):
need.
Nicole (13:09):
Sometimes it's hard to see where that progress is being
made and change is being made,but I know those of us that are
in this work and working withstates, like you said, Texas,
and we see these things, we dosee where there is progress.
It might be slow andincremental, but there is
progress being made.
If only there was a magic wandthat we could just wave over the
US and it would solve all theproblems.
(13:29):
Now that the Preeclampsiafoundation's more than 20 years
old, and you've been around fora while what things have you
seen that have been changedsince you first came around to
the Preeclampsia Foundation?
Eleni (13:41):
It's so funny because even though we hear these
stories and I think, oh my gosh,I can't believe this is still
happening since this happened tome 20 plus years ago.
The reality is that therereally have been a lot of
changes, and I think that we'reseeing a lot more now around
patient education andempowerment.
We talk a lot about how in theearly days we were so focused on
(14:03):
getting moms and their familymembers to recognize the
symptoms of preeclampsia so theywouldn't ignore them.
That is all now part ofprotocols.
If you're not doing patienteducation, you're practicing bad
medicine and the jointcommission and other, governing
bodies have implemented patienteducation as a requirement.
(14:24):
That's a huge leap from 20 plusyears ago.
And then I think the corollaryto it, we talk about signs and
symptom.
The key sign of preeclampsia ishigh blood pressure.
Now we're starting to see moreuptake of self measured blood
pressure and putting bloodpressure devices into the hands
of moms, especially those whoare at higher risk and teaching
(14:47):
them how you can monitor yourown blood pressure.
That's something that has beenbecome a huge thing.
Of course our own cuff kitprogram is an example of patient
provider teamwork that we'realways been advocating for.
There's also a much greaterbiological understanding of
preeclampsia, and I alluded tothat when I talked about this
precision medicine approach.
We do understand more aboutwhat's happening biologically,
(15:11):
and I think the other thing isthe standardization of basic
care What we're doing in Texasthis year, and we've done with
many other states in the pastfive to seven years, is all
about standardizing the basiclevel of care.
And I emphasize basic becausewe need a lot more than what's
(15:32):
happening with the severehypertension bundle.
But if everybody just doesthat, then we create a safety
net.
And that is something that hasreally garnered a lot of
progress and that we've seenhappening in the last 20 years.
So it's an exciting time to beworking in this space.
It really is.
I mean, 20 years ago it wasfrustrating.
Like we just felt like we werehitting our heads against a
(15:54):
wall.
But there's a lot happeningnow.
Nicole (15:58):
You talk about like the customization of care and really
treating each patientindividually.
But then there's also the basicminimum things that need to
happen.
From there is where you're ableto really take care of patients
by treating them eachindividually.
It's not that peanut butter andjelly approach.
It's not the same thing foreverybody.
Different states lookdifferent.
Different parts of states lookdifferent.
(16:19):
Everybody is individual Factoryassembly line processes now
kind of happened with healthcareand with maternity care, in
part because they're trying tohit these minimums.
But that's not enough.
That's a minimum.
How can those that have livedexperience and preeclampsia and
HELLP, all these differenthypertensive disorders of
pregnancy, get involved inworking with the Preeclampsia
Foundation?
Eleni (16:40):
The first step is to join our community, and there's so
many different ways that,somebody can do that.
Certainly come topreeclampsia.org.
That's sort of the hub ofeverything that we do.
But we have a number of socialmedia channels.
You can contact us throughthose.
You can contact us through ourFacebook group.
You can reach out to us viaemail, sign up as a volunteer.
(17:01):
We have a lot of programs.
Getting involved with MoMMAsVoices and becoming a Certified
Family Partner is a no-brainer.
But I say that at the sametime, somebody may not be quite
ready to do that and go public.
They may wanna work more behindthe scenes for a while.
The Promise Walk forPreeclampsia is a community
(17:22):
building fundraising event thata lot of folks have gotten
involved in across the countryand then a lot of people are
just kind of in this DIY mode.
They wanna a do-it-yourselffundraiser that speaks to their
own interests or they want to doeducation and outreach in their
local church community or othercommunities that they're
(17:43):
involved in locally.
The main thing is get in touchwith us because we do try to
match you with opportunitiesthat are where you are, the
place that you're at and thenyou're ready to get involved.
Nicole (17:55):
One last question as we wrap up.
Is there anything else you'dlike to make sure that listeners
know about the work that'sbeing done right now by the
Preeclampsia Foundation?
Eleni (18:04):
For listeners who are preeclampsia survivors, the
message really.
is one of hopefulness thatthere is a place for you to get
involved with us, to use yourexperience and your story to
make a difference.
There is a message ofhopefulness if you are still
(18:25):
interested in having morechildren and doing it in a way
that optimizes your healthoutcomes.
There's a lot that can be donenow.
We know a lot more to ensurethat you have a safe pregnancy.
For providers and otherstakeholders who are listening
to this, I think the importantthing to know is that the
Preeclampsia Foundation, we'vereally established ourselves as
(18:48):
a collaborator, as a partner, assomebody who wants to work hand
in hand with you to make theworld a better place for those
who are living or who experiencehypertensive disorders of
pregnancy and our credibilityand our history now of working
very collaboratively and veryproductively with stakeholders
(19:09):
is something that I would justinvite anybody to join us.
Nicole (19:14):
Eleni thank you for your time today and sharing more
with us and with our audienceabout the Preeclampsia
Foundation, and we look forwardto being able to share the same
information with otherorganizations and have them
spotlighted as well.
Eleni (19:28):
Thank you, Nicole.
Hello, and welcome to today's episode of The Power of
MoMMAs Voices Podcast, wherewe'll be sitting down with two
time severe preeclampsiasurvivor and chief Executive
Officer of the PreeclampsiaFoundation Eleni Tsigas.
MoMMAs Voices is a program ofthe Preeclampsia Foundation, and
as you heard about in our firstepisode, it began from
recognizing that changingmaternal healthcare in the US
(00:22):
started by bringing everybodytogether.
All types of patients and theirfamilies have been affected by
conditions like pre-eclampsiaand so many others.
Eleni, thank you for being herewith us today.
Obviously, we began this Powerof MoMMAs Voices Podcast to help
support patients with livedexperiences.
So would you start by tellingus just a little bit about what
brought you to your work withthe preeclampsia foundation?
Eleni (00:45):
Well, that's an old story because my experience with
pre-eclampsia happened, as Ilike to say, before the turn of
the century.
Back in 1998 and 99, I did havesevere pre-eclampsia twice.
The first time unfortunately welost our daughter, our first
born I was 29 weeks pregnant andit was a whole different world
(01:11):
back then.
In some ways, and in other wayswe're still hearing the same
stories, which is truly sad.
To summarize my preeclampsiajourney, it started with the
loss of my first child, gettingpregnant again and having severe
preeclampsia with my secondchild.
But in that one I was beingseen by an MFM and felt and
(01:32):
looked like a completelydifferent pathway where I was
carefully monitored.
Unfortunately, my son didsuffer from growth restrictions,
so he ended up in the NICU fora couple weeks.
I was in the hospital for acouple weeks before he was born.
He was in the NICU for a coupleweeks after he was born.
And then crazy that we were, wejust really didn't want an only
(01:54):
child and went for a thirdpregnancy.
And in that one I was seen notjust by an MFM, but kind of a
super specialist inpreeclampsia.
We did some at that time whatwere more unorthodox measures to
try to prevent me from gettingpreeclampsia a third time.
And it worked.
My son was born at 39 weeksweighing eight pounds, twice as
(02:15):
big as his brother.
I feel like through all thosethree pregnancies I had the full
gamut of every experience youcould possibly have, including
nearly losing my own life in myfirst pregnancy where I had all
the classic issues of my organsshutting down and I had an
(02:35):
undetected placental abruption,so I lost half my blood volume
when I delivered my daughter.
My own personal experiencebegan before the Preeclampsia
Foundation was even founded.
And so I didn't have thatresource through my first two
pregnancies, but I think it'sbecause of that I am so
(02:56):
passionate about those who areaffected, having a place that
they can come to get reliableinformation, to find a community
that they can connect with.
A lot of people don'tnecessarily have the kinds of
support systems that I had inplace.
And you see the result of thatin just how mentally devastating
this is on all levels.
Nicole (03:20):
That's something that you and I share unfortunately.
We're still seeing peoplecoming to us that have lost
babies because of preeclampsia.
Even though our experiences arelike you said, preterm of the
century or mine's not quite thatfar, but still it's not recent.
It's still things that we hearabout today.
I'm glad to hear that you foundthe Preeclampsia Foundation and
I did as well when we needed itand when we were able to use
(03:43):
that to kind of bring that, thatmeaning forward.
Let's talk a little bit aboutlike, what's happening in the
present.
As most of our listeners areprobably aware, we have serious
maternal health crisis here inthe US which has only recently
been brought forward to thenational attention, and it just
keeps having light shined uponit.
What moment did you first startto see healthcare providers and
(04:04):
policy makers starting to takethis work that the Preeclampsia
Foundation does and their otherpartners very seriously?
Eleni (04:12):
I think there were a few inflection points.
For preeclampsia specifically Ifeel one of our major
inflection points was around2012, 2013 when Dr.
Jim Martin, who unfortunatelywe lost last year, but when he
became president of ACOG, hemade it his passion to elevate
(04:36):
preeclampsia in that issue.
As an organization focused onpreeclampsia, that was a key
point in a lot of the progressthat we started to make around
the importance of patienteducation and developing
guidelines and protocols.
But on a bigger level, which isreally what we're trying to do
now with MoMMAs Voices iselevating the maternal health
(04:57):
experience overall.
I really think that one of themain inflection points was when
we finally got major media tostart investigating this
problem.
While we did a lot of work toget the Preventing Maternal
Death Act passed, a lot of thatwas driven by the ProPublica and
the USA Today.
That really brought this wholeissue out of the shadows.
(05:21):
Those series started tohighlight well-educated women
who had access to resources andto good healthcare, and they
were dying in pregnancy.
All of a sudden I think peoplestarted to realize this isn't
just an issue around access tohealthcare or the
disenfranchised having theseissues happening to them.
(05:42):
These articles really broughtout the fact that this is a
widespread issue.
And then once you start peelingback the layers and you realize
not only is a widespread issue,but the disproportional burden
of that issue on folks who don'thave access to healthcare or
(06:02):
have less access to healthcareor are living in rural areas of
the country or we're sufferingfrom racial and ethnic
disparities on this issue.
And just the extraordinaryburden on certain populations.
All of that came to light whenmedia started paying attention
to this, and we were able to getthe Preventing Maternal Deaths
(06:23):
Act passed, which really shoredup the data collection part of
this because it allowed then theresources and allowed the
states to focus on collectingdata about the moms who were
dying.
That gave us the fuel we neededto understand where the
problem's happening, what arethose preventable measures?
(06:45):
What are those key areas thatwe really need to be focusing
on.
As a result of that, I thinkthat we're just now seeing so
many promising steps andmeasures being taken.
Nicole (06:58):
What Preeclampsia Foundation program, besides
Mama's Voices of course, has youmost excited for 2023?
Eleni (07:05):
I will say for 2023 in particular, there's a couple of
areas.
The 10th anniversary of thepreeclampsia registry, which is
a research asset that we created10 years ago, and under that
umbrella of our role in tryingto catalyze research by funding
studies, but we also wanted toutilize this vast community of
(07:31):
survivors that we're workingwith to collect their data and
provide that in a wayinvestigators can use in their
studies.
We provided the data needed fora number of different studies.
Everything from genetic studiesthat help us understand some of
the genetic underpinnings ofthis disorder, as well as
(07:52):
qualitative studies that help tocollate all of the information
that we as survivors know aboutour experience and collate it in
a way that investigators canthen report on it and identify
those experiences that we haveas patients.
Investigators are veryevidence-based, and even though
(08:13):
we know as survivors, like ourstories, our experiences can be
super instructive.
For investigators who want touse that information, we can
package it for them in a waythat combines it with other
stories, and we start seeingtrends and patterns and things
that aren't just outliers,right?
It's not like this justhappened to Eleni, or this just
(08:35):
happened to Nicole.
No, it happens to many womenand pay attention.
We've got the data to to showfor it.
The registry has allowed us todo with what we call qualitative
research to help investigatorsunderstand the preeclamptic
experience and really representthat on behalf of patients and
survivors.
(08:55):
The registry itself, one of thethings that we're launching in
2023 is a Take 10 campaign, andthat's really intended to focus
on the enormous need to increasediverse representation of all
women in the registry.
We know that it will affect thescience if we're not all
equally represented in theregistry.
(09:16):
We're working with a number ofdifferent partners who work,
especially with Bipoc women toincrease their representation in
research.
Nicole (09:25):
That's always just so important on having that patient
voice, patient participation.
I know you mentioned just onone thing there, but we also are
very interested in havingpatients help design those
projects as well and not just bethe subject.
That's sometimes a novelthought, but we're getting there
and we do see improvements inthat happening.
What can be done to improve theway preeclampsia care is
(09:46):
managed here in the US?
Eleni (09:50):
That could be like a five part series just by itself,
Nicole.
But I would say look at some ofthe issues we're addressing.
One is a term that we've coinedcalled the three Deadly Ds.
This is where the patient voiceis so instructive because as
you hear, 20 years into thisprocess, we have heard tens of
(10:10):
thousands of stories frompreeclampsia survivors, and one
of the things that tends to getrepeated is this idea that
patients are experiencing delaysin getting the care that they
need.
They might be in denial thatsomething bad is happening.
Why patient education is soimportant.
Here's what you need to payattention to and don't ignore it
(10:32):
and don't be like supermom andall these things.
So there's a lot of denial.
We often will talk about thenurses or doctors or healthcare
providers denying what they seein front of them.
And that definitely is part ofit, but it's also on us to not
deny what we're feeling and whatexperiencing.
That can be deadly and we wereworking to overcome that.
(10:53):
The last thing is dismissal,and that's where we try to have
our voices heard.
We're trying to report what'sgoing on with us and we're just
not being heard, dismissed,we're being, sent off in a
different direction becausethat's just normal pregnancy.
I do think on all of those, thetide is turning.
(11:14):
I mean, we've worked with theCDC to get the Hear Her campaign
launched.
There are a number ofindividual programs.
We're working with Texas, bythe way that's something else
I'm super excited for 2023 isworking with one of the big five
baby states, which is Texas anda state that's gotten a lot of
notorious attention for nothaving really great maternal
health outcomes, and we are justprivileged to be working super
(11:37):
closely with the state to deploythe hypertension, severe
hypertension bundle or protocolsto turn that around in that
state.
Denial and delays are thingsthat we are working to overcome
when it comes to preeclampsia.
The other thing I'm just gonnamention real quickly, and I
would love to be able to rewindthis podcast like five years
(11:59):
from now and go, wow Eleni wasso prescient.
She looked into her crystalball and knew where all this was
going.
I'd love to say that's true.
In the future, but I thinkincreasingly we're recognizing
that for preeclampsia to besolved, it requires a precision
medicine approach.
We're focusing a lot on thehypertension part of
preeclampsia, but we also needto focus a lot on the placental
(12:23):
dysfunction.
What's breaking down in theplacenta.
Some people get preeclampsiabecause of all the
cardiovascular part of it, andother people get preeclampsia
because of the placentaldysfunction part of it.
We need to get to a place wherewe very precisely diagnose what
kind of preeclampsia you'regetting, why you are getting it,
(12:44):
and then customize thetreatment accordingly because
one size fits all ain't gonnawork.
We're seeing that over and overagain.
So I'm super excited because Ithink that a lot of the research
that's happening in academicinstitutions and even a lot of
the companies that are startingto invest in this space are
realizing that that precisionmedicine approach is what we
(13:07):
need.
Nicole (13:09):
Sometimes it's hard to see where that progress is being
made and change is being made,but I know those of us that are
in this work and working withstates, like you said, Texas,
and we see these things, we dosee where there is progress.
It might be slow andincremental, but there is
progress being made.
If only there was a magic wandthat we could just wave over the
US and it would solve all theproblems.
(13:29):
Now that the Preeclampsiafoundation's more than 20 years
old, and you've been around fora while what things have you
seen that have been changedsince you first came around to
the Preeclampsia Foundation?
Eleni (13:41):
It's so funny because even though we hear these
stories and I think, oh my gosh,I can't believe this is still
happening since this happened tome 20 plus years ago.
The reality is that therereally have been a lot of
changes, and I think that we'reseeing a lot more now around
patient education andempowerment.
We talk a lot about how in theearly days we were so focused on
(14:03):
getting moms and their familymembers to recognize the
symptoms of preeclampsia so theywouldn't ignore them.
That is all now part ofprotocols.
If you're not doing patienteducation, you're practicing bad
medicine and the jointcommission and other, governing
bodies have implemented patienteducation as a requirement.
(14:24):
That's a huge leap from 20 plusyears ago.
And then I think the corollaryto it, we talk about signs and
symptom.
The key sign of preeclampsia ishigh blood pressure.
Now we're starting to see moreuptake of self measured blood
pressure and putting bloodpressure devices into the hands
of moms, especially those whoare at higher risk and teaching
(14:47):
them how you can monitor yourown blood pressure.
That's something that has beenbecome a huge thing.
Of course our own cuff kitprogram is an example of patient
provider teamwork that we'realways been advocating for.
There's also a much greaterbiological understanding of
preeclampsia, and I alluded tothat when I talked about this
precision medicine approach.
We do understand more aboutwhat's happening biologically,
(15:11):
and I think the other thing isthe standardization of basic
care What we're doing in Texasthis year, and we've done with
many other states in the pastfive to seven years, is all
about standardizing the basiclevel of care.
And I emphasize basic becausewe need a lot more than what's
(15:32):
happening with the severehypertension bundle.
But if everybody just doesthat, then we create a safety
net.
And that is something that hasreally garnered a lot of
progress and that we've seenhappening in the last 20 years.
So it's an exciting time to beworking in this space.
It really is.
I mean, 20 years ago it wasfrustrating.
Like we just felt like we werehitting our heads against a
(15:54):
wall.
But there's a lot happeningnow.
Nicole (15:58):
You talk about like the customization of care and really
treating each patientindividually.
But then there's also the basicminimum things that need to
happen.
From there is where you're ableto really take care of patients
by treating them eachindividually.
It's not that peanut butter andjelly approach.
It's not the same thing foreverybody.
Different states lookdifferent.
Different parts of states lookdifferent.
(16:19):
Everybody is individual Factoryassembly line processes now
kind of happened with healthcareand with maternity care, in
part because they're trying tohit these minimums.
But that's not enough.
That's a minimum.
How can those that have livedexperience and preeclampsia and
HELLP, all these differenthypertensive disorders of
pregnancy, get involved inworking with the Preeclampsia
Foundation?
Eleni (16:40):
The first step is to join our community, and there's so
many different ways that,somebody can do that.
Certainly come topreeclampsia.org.
That's sort of the hub ofeverything that we do.
But we have a number of socialmedia channels.
You can contact us throughthose.
You can contact us through ourFacebook group.
You can reach out to us viaemail, sign up as a volunteer.
(17:01):
We have a lot of programs.
Getting involved with MoMMAsVoices and becoming a Certified
Family Partner is a no-brainer.
But I say that at the sametime, somebody may not be quite
ready to do that and go public.
They may wanna work more behindthe scenes for a while.
The Promise Walk forPreeclampsia is a community
(17:22):
building fundraising event thata lot of folks have gotten
involved in across the countryand then a lot of people are
just kind of in this DIY mode.
They wanna a do-it-yourselffundraiser that speaks to their
own interests or they want to doeducation and outreach in their
local church community or othercommunities that they're
(17:43):
involved in locally.
The main thing is get in touchwith us because we do try to
match you with opportunitiesthat are where you are, the
place that you're at and thenyou're ready to get involved.
Nicole (17:55):
One last question as we wrap up.
Is there anything else you'dlike to make sure that listeners
know about the work that'sbeing done right now by the
Preeclampsia Foundation?
Eleni (18:04):
For listeners who are preeclampsia survivors, the
message really.
is one of hopefulness thatthere is a place for you to get
involved with us, to use yourexperience and your story to
make a difference.
There is a message ofhopefulness if you are still
(18:25):
interested in having morechildren and doing it in a way
that optimizes your healthoutcomes.
There's a lot that can be donenow.
We know a lot more to ensurethat you have a safe pregnancy.
For providers and otherstakeholders who are listening
to this, I think the importantthing to know is that the
Preeclampsia Foundation, we'vereally established ourselves as
(18:48):
a collaborator, as a partner, assomebody who wants to work hand
in hand with you to make theworld a better place for those
who are living or who experiencehypertensive disorders of
pregnancy and our credibilityand our history now of working
very collaboratively and veryproductively with stakeholders
(19:09):
is something that I would justinvite anybody to join us.
Nicole (19:14):
Eleni thank you for your time today and sharing more
with us and with our audienceabout the Preeclampsia
Foundation, and we look forwardto being able to share the same
information with otherorganizations and have them
spotlighted as well.
Eleni (19:28):
Thank you, Nicole.
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