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 ...
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 ...
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 ...
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
Five weeks ago, the Preeclampsia Foundation led a historic gathering of nine companies, as well as some of the leading clinicians and researchers in the field of preeclampsia. We also had leaders and front line obstetricians from outside the "inner circle" to ensure we weren't doing too much naval gazing.
This Biomarker Consortium was evidence of several of our core values: we wanted to be influential, catalytic and bold. As the patient advocacy organization caring passionately about improving pregnancy outcomes, we were uniquely positioned to invite and get positive responses from every company who has or is investing in biomarkers as a more advanced technology to diagnose preeclampsia or screen pregnant women for future disease.
I was energized by the ideas and commitment in the room, by the spirit of collaboration and the recognition that together we can do much to advance the momentum and attention on preeclampsia. A report is being developed ...
You can't open your email or your mailbox without receiving a solicitation from another worthy charity. A recent email I received warned of giving to certain charities that spent too much on their administrative costs or paid their CEOs exorbitant salaries, but unfortunately did nothing to help me objectively evaluate a charity's actual status, mission and financial records. It's easy to become a cynical philanthropist when unvetted alarmist messages hit your inbox. The recent Powerball Lottery got me daydreaming about winning and becoming a big ticket philanthropist. Being the steward of half a billion dollars is a huge responsibility. Of course, being the steward of even a much smaller amount is also a responsibility. How can we sit down with a checkbook and a stack of requests and feel good about our end-of-the-year charitable gifts?
I was thrilled to be able to announce to resounding applause, "It's official! The US Department of Health and Human Services has declared May National Preeclampsia Awareness Month!" at our annual benefit dinner, Saving Grace - A Night of Hope, on Friday, Oct. 26, in Point Clear, Alabama. The intimate evening was hosted by Leslie Weeks, former board member of the Preeclampsia Foundation and Owen Bailey, hospital administrator for University of South Alabama's Children's & Women's Hospital.
Board members and long-time volunteers of the Preeclampsia Foundation flew in from around the country to take part in this annual benefit dinner, this year held in a beautiful and tranquil setting, the Sonny Hill Polo Complex. A buffet style dinner was held in the beautifully appointed pavilion, followed by a program under a delicately lit tent that overlooked the water. Dr. Gabriella ...
Shelly Bridgewater was 25 years young when she died in 2005 from preeclampsia. Her best friend, Bree Housley, wrote a book about their unlikely friendship and the impact Shelly, "the social butterfly," had on her life. We Hope You Like this Song launches this week and is available in our Marketplace. We talked with Housley about inspiration, Karaoke, and how the Preeclampsia Foundation helped her healing.
What inspired you and your sister to embark on your yearlong tribute to Shelly ...
May and Mother's Day are so intertwined that it's hard to think about one without the other, especially here at the Preeclampsia Foundation, where we've built a nationwide campaign at www.promisewalk.org/campaign to get the word out about preeclampsia - the "thing" that for many survivors turned our entrance into motherhood into a nightmare.
I believe celebrating mothers is a commemoration of extremes. Not just because preeclampsia is an extreme condition, but because the mothers I am ...
What do pink hair, a tattoo and a Bat Mitzvah have in common?
No, not the latest reality show teaser!
They are examples of the creative and unconventional genius of preeclampsia survivors around the country who are turning their life experiences into stories of hope and promise for others. I'm constantly amazed and inspired by the originality of our families!
First time Promise Walk coordinator Laura Morrison in Oklahoma City has embraced her calling to raise preeclampsia awareness in Oklahoma's capital city, where almost 4,000 women will get preeclampsia in 2012. To do this, Laura vowed that if their team achieves their fundraising goal of $10,000 she's going to dye her hair pink. For this grandmother and Logistics Management specialist ...
You can't trip through February without noticing that heart health organizations everywhere are using the month to raise awareness about women's heart disease. For preeclampsia survivors, this message comes with an important footnote - your pregnancy history matters to your long term health and especially your risk for heart disease. Last year, the American Heart Association updated their guidelines to draw attention to the fact that women with a history of preeclampsia are at higher risk for heart disease, some studies have equated our risk to that of a smoker. You can read more about this research on our Community Forum.
While some of us may shake our fists ...
What an amazing whirlwind of a weekend we had in New York City! You'll hear more from our Saving Grace co-chair Patrick Dignan in next month's newsletter, but for now let me just say "Wow! New York really rolled out the red carpet for the Preeclampsia Foundation." Here are a few headlines from the events of Saturday, November 12.
During the day we were honored to co-host a post-graduate course at Weill Cornell Medical College with experts from Yale, Harvard, NYU, University of Washington, Columbia and Cornell, along with always stimulating Dr. Baha Sibai, plus yours truly delivering a session on patient-provider communications. Over 70 attendees comprising ...
The term “empowered patient” has become overused and often exhausting to embrace. If that sounds completely contrary to what we’ve been espousing at the Preeclampsia Foundation, it’s because over time and in an increasingly complex health care system, for most of us, what is expected of us as “empowered patients” has become too big to manage. So try to keep it simple and doable.
5 Steps to Being “Empowered”
The cornerstones of being an empowered patient, particularly when faced with a complicated pregnancy, include:
1. Knowledge. Access to understandable and accurate health information is essential to empower a woman to participate in her care, and patient-centered organizations take responsibility for providing access to that ...
I often call myself the "poster child" for the power of education. When you juxtapose my first pregnancy, managed by a very nice, somewhat elderly doctor who euphemistically patted me on the head and made me feel like everything was always all right, against my second pregnancy, managed by an equally nice, albeit younger and more knowledgeable doctor, there are some startling differences beyond age and experience that have everything to do with patient-provider communication (yes, they were both men so ditch the gender stereotypes).
Both pregnancies resulted in severe pre-term preeclampsia. In the first, my baby died. In the second, my baby lived, albeit with a two-week stay at Hotel NICU. There are obviously lots of nuances to each of my pregnancies, but as I look back, I can say with certainty that one of the critical factors for a successful pregnancy is the patient/provider ...
In June, Americans celebrate Father's Day, a holiday that can be bittersweet for preeclampsia patients and their families, many of whom have experienced recent and past losses or endured harrowing scares. The Foundation often describes survivors of preeclampsia as members of "the Silent Club," for the way that such a devastating pregnancy experience can be both silent and isolating. Nevertheless, there is a group whose voice we hear far less when discussing our pregnancy experiences: our husbands, significant others and the fathers and grandfathers of our children.
These men often become the "silent-er" club, watching helplessly and recovering quietly as the blessed event they expected their wives' pregnancies to be turns out quite different. But many of them go on to stand next to us when we throw ourselves into volunteering for the cause, contributing their own expertise and perspective, and even stepping up to become leaders themselves as several members of our Board ...
May is Preeclampsia Awareness Month, as well as being the month where all of us celebrate the many maternal figures that have positively impacted our lives. As many of you can attest, motherhood is about more than a single day's recognition for the work that you lovingly (or at times begrudgingly!) do year-round for your family.
The same could be said about Preeclampsia Awareness month, which has always been about more than raising a banner or hosting a single event. Preeclampsia Awareness month is about taking action on behalf of a greater family: the global community of women and their families. For the Preeclampsia Foundation, May is not a culmination, but a beginning. It is a call to ACTION.
As such, May's newsletter is a call-to-action to make preeclampsia not just "that pregnancy thing," but a word that reminds people of ...
It's hard not to get excited when you read that headline. And then you remember that it's April 1st and you're probably having your leg pulled. Before you consider yourself an "April Fool," consider these other headlines, pulled directly from media sources around the world over the last month or two:
"Faulty gene that causes pre-eclampsia discovered."
"Gene study lifts hopes on pregnancy."
"New gene linked to preeclampsia discovered."
"First genes linked to pre-eclampsia and immune system disorders."
Reasons to get excited? Safe to trust the news source?
Many investigators are using genomics - the study of our genes - to discover areas of our genome responsible for specific pregnancy functions that seem to go awry in preeclamptic women. The problem with headlines that suggest "the" gene has been found is that experts mostly agree that preeclampsia is a multifactoral disease, meaning that preeclampsia may have multiple causes with ...
Posted in Preeclampsia Information on March 02, 2011 by Eleni
I don't like to spend too much time looking backwards, but every bit of progress deserves to be celebrated. On Feb. 15, the American Heart Association released updated guidelines for women's heart disease and, after years of our advocating for recognizing the role of preeclampsia, it was finally included. Health care providers are encouraged to collect information about a woman's pregnancy history to better understand her risk of heart disease. We think more guidance is needed, but it's a great start!
Thanks to everybody who spent a few minutes registering ...
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!
Thanks to St. Valentine's Day, February has been embued with images of hearts and emotions. The women's heart movement 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 ...