Answer: Every woman who ever uttered the words, "If only I knew..." after being stricken with preeclampsia. 

A Message from Executive Director Eleni Z. Tsigas

The executive summery of the eagerly anticipated new guidelines for the diagnosis and management of hypertension in pregnancy was just published by the American College of Obstetricians and Gynecologists (the College) in the electronic version of their November journal. 

The guidelines include a recommendation to provide preeclampsia education to all patients as a means of improving pregnancy outcomes. Healthcare providers need to inform women during the prenatal and postpartum periods about the signs and symptoms of preeclampsia and stress the importance of contacting healthcare providers if these are evident. 

The College is assuring its members that this can be done without increasing patient anxiety and by using effective health communication practices. We can help with that. Our educational materials are credible and shown to be effective, even with patients with lower health literacy. Our illustrated signs and symptoms tearpad was created and tested for just this purpose. 

We consider it an important accomplishment that the College and several state initiatives now include patient education as a routine recommendation and consider it a central consideration in all discussions about patient safety and quality improvement. Patient education early in the prenatal period, during pregnancy, and again after delivery (at the start of the postpartum period) is considered a best practice. 

Despite what I believe is a nationwide movement in patient education in preeclampsia now sweeping the country, the fact remains that this will be for naught if our healthcare providers don't act quickly and accurately when sick patients present for care. Thus, our mission must continue to include education for those who care for expectant and postpartum mothers, as well as partnering with numerous professional and consumer organizations to advance quality improvement and patient safety initiatives to reduce maternal and perinatal mortality and morbidity. 

Numerous articles this month reflect the power of women and their surviving loved ones telling their personal stories and crying out everywhere: "If only I knew..." We salute the power of these collective voices and what you have already accomplished! Thank you.

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Margaret Meade once said, "Never doubt what a small committed group of citizens can do to change the world. Indeed, it is the only thing that has."

At the Preeclampsia Foundation, we like to say, "Never doubt what a large cohort of preeclampsia survivors can do to catalyze research. Indeed, it is the only thing that will."

Welcome to our Special Research Edition of Expectations.

I've heard thousands of stories with poor outcomes that started with "If only I had known" or "If only I had known and pushed harder to be taken seriously." What women wanted to know were the signs and symptoms of preeclampsia. With that information, they would have immediately responded to that unrelenting headache or the searing pain running up over the shoulder. They would have known to push back, if their complaints weren't taken seriously, with a request to be have their blood pressure checked, be seen by an expert, or have blood drawn for analysis.

After so many stories, we initiated research to quantify what we already knew anecdotally regarding the need for patient education. Our own 2008 "Lack of Preeclampsia Awareness Study" and studies performed by Dr. Whitney You and published in 2011 in the American Journal of the Obstetrics & Gynecology, confirmed our suspicion that not enough women are informed about preeclampsia, and even if they are informed, comprehension is poor.

Thus began an active part of our mission: patient education. Those outcomes are now being realized as the professional organization that board certifies the majority of our nation's obstetricians will be formally recommending patient education as a regular part of prenatal and postpartum care. Our Illustrated Preeclampsia Symptoms Tear Pad has been included in a California state-wide collaborative, CMQCC, that is intended to reduce maternal deaths.

Improving patient education tools and methods is just one way that women affected by preeclampsia -- our "cohort" -- identified a problem and then worked to change it. (Our work in patient education is definitely not done, but enormous progress has been realized.)

But can preeclampsia survivors advance medical research? Can we push scientists more quickly to a prevention, a cure, or an intervention (other than delivering the baby)?

Before the summer is out, we will be launching The Preeclampsia Registry, a living data source of patients and family members, to accelerate research.

There is plenty of precedent that citizen scientists, armed with their own "stories" and DNA, have successfully isolated genes responsible for their disease, or identified useful therapies. We, too, can catalyze research, equip researchers with novel hypotheses and a cohort -- a cohort not just willing, but impatient to see progress and to use their own cases as the enabling data.

What's ahead for The Preeclampsia Registry?

Approximately 100 "beta users" have already enrolled in the registry to help us test the technology. We have already secured approval from our Institutional Review Board. Before the summer is over, the registry will be open for public enrollment, including international registrants. Participants will include those directly affected and their female relatives who will enter self-reported information, upload medical records, and, in Phase 2 (planned for next year), biological samples such as DNA.

Researchers will be able to do studies over long periods of time, across geographical boundaries, and within various demographic groups.

How can you participate?

1. Check back often at www.PreeclampsiaRegistry.org for the upcoming announcement about the Registry's public launch.

2. Participate in our soon to be announced Patient Advisory Council, a diverse group of affected individuals who will influence research questions.

3. Give a gift to the Preeclampsia Foundation and, if you wish, earmark it for The Preeclampsia Registry.

I'm looking forward to joining Registry participants as we add our collective experiences to the scientific body of knowledge that will make a difference for future mothers and their babies!

Warmest regards,

Eleni Tsigas
Executive Director

 

 

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LETTER FROM THE EXECUTIVE DIRECTOR, ELENI TSIGAS

It's hard to imagine the impact that a public awareness event like The Promise Walk for Preeclampsia™ can have on the consciousness of the public, our elected officials, health care providers and researchers, but with 44 walks scheduled in major markets across the United States, we are making strides and delivering hope!

Ten years ago, I daresay not too many people had heard the word "preeclampsia." Now the media often cover the latest research or provide helpful education, for example, CNN's February article on five things you need to know about eclampsia, and stories about real lives that have been impacted, like these Kansas City and Dallas mission family stories.

We are enormously grateful to our national sponsors who join hundreds of regional and local sponsors to make this event possible and contribute to the impact we are making! Interestingly this year, I feel a personal connection to all our 2013 national sponsors:

  • BabyCenter has an extremely robust website, used by about 80% of all pregnant women and is the top referral site (apart from search engines) to our website. Thank you to our national media sponsor and for naming us one of their Global Giving partners!
  • After my first son was born with a straw-sized dried-up umbilical cord (how he thrived is beyond me!), I researched cord blood and found out that it is a rich repository of stem cells, providing oodles of controversy-free building blocks that could advance medical research. Determined to harvest cord blood from any other pregnancies I might have, my second son was born with a veritable "fire hose" making the local cord blood bank all the richer! ViaCord from PerkinElmer also believes in the power of cord blood, and we're grateful for their support of The Promise Walk.
  • And, what brand of infant and toddler car seats did I purchase when my sons were babies? That's right - Britax, whom we welcome to The Promise Walk and to the Preeclampsia Foundation as a first year national sponsor. Their focus on the health, safety and well being of our babies is a shared passion. Thank you, Britax!
  • Finally, Creative Counsel, based in Portland, Ore., is owned by a dear friend who has consistetnly provided us with the most competitive prices for our t-shirts and other merchandise for several years. He and his wife, Jennifer, were married on a day that, for my second pregnancy, turned into a horror as I left their wedding and went home to cry over a sure-to-be pregnancy loss. It's a scary story that ended well - my baby survived, not only that mid-pregnancy scare, but also a severe case of preeclampsia, to become my now delightful teenage son. We're so thankful for Creative Counsel's continued support!

That may sound like a lot of disconnected threads, but it all comes together to fill my heart with gladness and gratitude. It truly takes a community of caring to move the needle. Thank you readers, for allowing me to get a bit personal with my experiences!

Another indicator of the impact the Preeclampsia Foundation is having is evident through our presence at major medical science conferences.

What do we have that researchers want?

When I first started doing this work about a decade ago, I would attend a medical meeting where introductions went something like this:

Me: "Hi, I'm Eleni Tsigas with the Preeclampsia Foundation."

Them: Eyes glazed over. "Huh? There's a foundation for that?"

Last week in Orlando at the annual international meeting for the Society for Gynecological Investigation (SGI), it went more like this:

Me: "Hi, I'm Eleni Tsigas."

Them: Blank stare. (Well, OK, not everybody. Some smiled.)

Me: "With the Preeclampsia Foundation..."

Them: "Oh yes! We know you well. You do great work! You have a great website! When are your research grant applications due this year? Can we partner with you on..."

We were at SGI to preview a database that will provide an important asset to the research world very soon. Our ability to tap into the vast troves of information from preeclampsia survivors around the world had the rapt attention of investigators. Our ability to stay in touch with survivors and their children presents a unique value, nearly unparalleled by any other repository of information and biological samples. Stay tuned for the launch of this registry this summer and how you can be part of it and the future of preeclampsia research.

And never underestimate the thread of connections that we each weave with our lives!

Warmest wishes,
Eleni Tsigas

 

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It's March... which in Florida means spring training for Major League Baseball. In fact, I can practically hear the crack of the bat just ten minutes from our headquarters! But the real home runs are happening for the Preeclampsia Foundation all across the country. We're halfway to Preeclampsia Awareness Month, and our Promise Walk teams all across the United States are knocking it out of the ballpark!

Fundraising teams have used our new tools and are doing a superb job, putting our Promise Walk $7,000 ahead of where we were last year. And not only will we be celebrating our first-ever national designation, but 16 states and cities have declared May Preeclampsia Awareness Month in their jurisdictions. Read on for an interesting article that describes why that is so important to our advocacy work. I'm also trying really hard not to spill the beans on two exciting announcements we'll have in May, plus oodles of fun events like Twitter chats, blogs, and virtual campaign buttons with content partners, which you'll hear more about next month.

 

Later this month, we'll be at the 60th Annual Meeting of the Society for Gynecologic Investigation, announcing new funding for research grants and providing investigators a sneak peek at a new research tool we're developing. It's a source of deep pride that the Preeclampsia Foundation has funded over half a million dollars in research, delivering on its mission to catalyze research. Members of our Medical Advisory Board recently met and adamantly reinforced the important gap that the foundation is filling through our Vision Grant program.

 

What makes this possible? It is because we have amazing volunteers working hard, having fun, being creative, and always leaning into the edge of possibility to raise the money and make the connections that make these programs achievable. To each of them we give enormous thanks!

 

Although awareness is our "theme" this month, I fear that term tends to get overused and the impact of what awareness-building can accomplish gets lost. The collective work of every supporter, fundraiser, volunteer, researcher, physician, nurse, midwife - in short, every friend of the foundation has contributed to a growing awareness that preeclampsia will no longer be left as a footnote in pregnancies. It is not orphaned. It is not rare. It is not inconsequential. It is worthy of progress, attention, funding, education, and public awareness. It is worthy of the main stage. And you - no matter your role or responsibility - have played a critical role in raising the awareness that has allowed us to accomplish much.

 

Warmest wishes,

Eleni Tsigas

 

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Unless you have been completely untethered from all media this week, you know that a popular character on British historical drama Downton Abbey died from postpartum eclampsia, shocking and devastating over 8 million devoted viewers. In her death, Lady Sybil became our unwitting celebrity spokesperson!

With advance knowledge of this surprising plot element, thanks to our sister organization in the UK where the show aired last fall, our team developed a simple but savvy public relations campaign, including an Op-Ed piece in the Daily Beast, a press release, a newly released Health Information article, and social media strategy centered around Twitter and Facebook. Our ability to anticipate the firestorm of attention Lady Sybil's death allowed us to ride the tsunami of national and major market media coverage, Twitter, Facebook and blogs that discussed the episode after its Sunday night airing on PBS.

When I asked our resident social media guru, Laney Poye, what she thought was the most important result of this campaign, she said, "It was heartening to see the Foundation positioned by other influential organizations as the go-to public resource for more information about preeclampsia and eclampsia. For example, groups like the American Public Health Association and Masterpiece Theater PBS referenced the Preeclampsia Foundation to assist their hundreds of thousands of followers in understanding the medical reality of the fictional show."

She continued, "We had more than 400 'retweets' of our original Twitter content related to Downton Abbey and had over 22,000 new website visitors in just three days."

Although many disgruntled fans who missed the show complained of 'spoilers' in the headlines the next morning, we were gratified that an even larger audience responded with heartfelt personal accounts, sometimes reawakened grief, but mostly enlightened gratitude for our timely, credible and informative perspective. Our work to be in front of the conversation on preeclampsia and eclampsia shifted the worldview of hundreds of thousands of people as they now know that this common complication of pregnancy, 100 years later, is still taking the lives of mothers and babies and seriously threatening many more. And they know that there's something that can be done about it. We need to empower women with knowledge, advocate for a patient-provider partnership, and improve health care responses - all part of the Foundation's current assignments, and clearly evident in the social media dialogue over the past few days.

"The fact is that a POPULAR TV show (on both sides of the pond) used preeclampsia ACCURATELY as a plot point is actually extremely important. Think about how many people now know about it who may not have even heard of it before. It brings the information to light."

~~~~~

"The mother of my godson died from preeclampsia shortly after she gave birth in 2003. It manifested atypically, and she was actually admitted to the hospital by her astute eye doctor after her OB-GYN blew her off (it was labor day weekend - the doc told her she was overreacting). 3 days later she was dead. So, yeah...it still happens."

~~~~~

"Dumb article? I think not. I wish every day I had been made aware of the signs and symptoms of pre-eclampsia. Don't just assume your care provider has it under control. Educate yourself."

I watched the reaction to our media campaign with amusement and pride. Never before had we so successfully leveraged a fictional event to draw massive public concern for our cause. I know that it will be short lived, even as responses to real life tragedies often are. But when the sound and fury dies down, the Preeclampsia Foundation will still be here, telling our stories and inspiring researchers, policy makers, women and their care providers to action. And I'm confident in and grateful to our mission partners - like my Op-Ed co-author Christine Morton from CMQCC - who will help lead the way.

I'd much rather have my emotions sucker-punched by the death of a fictional character than by the loss of a loved one to the many real-life families who turn to us for support and information. It is for you that we continue our good, hard, even sometimes thankless, work. Please, if you haven't yet, consider joining with us as a volunteer, donor, advocate or mission partner.

Warmest wishes,

Eleni Tsigas

 
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<p>Who can stay "heart healthy" when they're trapped inside looking at a blanket of snow? Hey, unplug the snow blower and get out your shovel... or better yet, grab a sled and revel in it! In all seriousness, we wish our friends across the preeclampsia universe warm cups of hot cocoa. And for those in the warmer climes, yours truly included, there will be no boasting about too much sunshine!<br /> <br />Thanks to St. Valentine's Day, February has been embued with images of hearts and emotions. The <a href="http://www.goredforwomen.org" target="_blank">women's heart movement</a> has adopted the month and we would be wise to pay heed to those healthy heart messages. After all, preeclampsia survivors - particularly repeat offenders - have double the risk of developing heart disease in the next 5 to 15 years of our lives. If your physician hasn't asked you about your pregnancy history, make sure you let her or him know all about your pregnancies - the good, the bad and the ugly. It matters. See our newest brochure <a href="http://www.preeclampsia.org/market-place" target="_blank">Preeclampsia &amp; Heart Disease</a> to learn more about how significant your pregnancy history is to your future heart health. And if you were waiting for the right reason to lose weight, eat right and start exercising and haven't found the mirror shouting at you, then look at your family and tell yourself that they are worth it.<br /> <br />As for the emotions related to February, we're debuting a new feature this month - <a href="/forum/viewtopic.php?f=14&amp;t=41702" target="_blank">Writing Heals</a>. So many preeclampsia survivors have found solice, meaning, analysis and even life-long missions through the writing process. Following my own perinatal loss, I stumbled upon an all-day workshop called "Writing Through Loss" that gently and yet purposefully led me through one of the most healing parts of my grief journey. Ty Allen explains this new project and leads us to a special spot in our<a href="/forum/viewtopic.php?f=14&amp;t=41702" target="_blank"> Community Forum</a> to post your poems, essays or freeform thoughts, all part of the healing process.<br /> <br />This past month we were saddened by another mother lost to preeclampsia. <a href="http://www.knoxnews.com/news/2011/jan/29/raising-ruby-up/" target="_blank">Kristin Coker</a> in Tennessee, died of post-partum eclampsia after giving birth to her beautiful little girl Ruby Evelyn. If that makes you sad, or more appropriately, mad, please take a few minutes to fill out our <a href="http://www.zoomerang.com/Survey/WEB22BQVRAJL9T" target="_blank">Advocacy Survey</a>. What's the connection? Among the many issues we must grapple with is the lack of accurate data about maternal and perinatal deaths in the US. We know these numbers are under-reported. A very few states have tackled this problem, and then gone beyond to not just ask "How many are really dying?" but "Why?" and "What can we do about it?" We, as an organization of emboldened patients, must also ask those and other equally challenging questions. Answers from our Advocacy survey will help us allocate resources and attention to the most important issues that matter to you. Please let us hear your voice.<br /> <br />With that, warm up the hot chocolate, shovel a few more feet of snow, love your family and luxuriate in a moment of knowing that there's a huge "family" who cares deeply about your concerns and experiences with preeclampsia. And, as always, I'd love to hear your feedback. How did you use writing or any other techniques to heal from your preeclampsia experience?</p>

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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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