One of the hallmarks of preeclampsia is its rapid progression: one minute you may be feeling what seems like the normal discomfort of pregnancy, and the next you may be fighting for your life.
Women who have experienced this rapid decline in health due to a hypertensive disorder of pregnancy are often overwhelmed not only by their symptoms but by the extreme nature of the measures taken to preserve their lives and the lives of their babies.
This onslaught of unexpected activity is centered around one of the most life-changing events a woman will encounter - giving birth. The routine delivery that was once on the horizon is shattered into an array of possible outcomes, many of them negative.
But what happens after the monitors are turned off and the IV's are removed? Families are left to pick up the pieces of the preeclampsia experience and try to fit them into a story that makes sense. Talking over the details can be quite painful, confusing, and ...
On Wednesday, May 18, the Preeclampsia Foundation's Board Chairman Pat Dignan hosted a Saving Grace 2011 'Kickoff Reception' in midtown Manhattan. The purpose of the event was to gather New York City area constituents, share thoughts and ideas, and really build momentum toward the gala.
"Mission Accomplished!" announced Dignan. "We had a great turnout, despite a rainy and blustery Manhattan evening."
Attendees included area medical practitioners, corporate and individual sponsors, as well as leadership members from both the Preeclampsia Foundation and the Foundation for America's Blood Centers (FABC), since this year's Saving Grace Dinner Gala is a joint fundraiser, to benefit both foundations.
After Dignan welcomed the guests and delivered some opening remarks, a series of stellar presentations followed:
Lauren Larsen, President and Chief Ambassador of the FABC detailed how severe preeclampsia impacted her ...
We often forget that the faces behind preeclampsia and HELLP syndrome are not just feminine; they are also the faces of fathers and fathers-to-be who are coping with their wife's complicated pregnancy, the loss of a baby, or the loss of their beloved wife.
Fathers come to the Foundation's Community Forum looking for answers to their unique questions: how to deal with post-pregnancy health care, how to be a champion for their wife's best care, or whether they are "overreacting" to their perceptions of inadequate health care. Some of these questions mirror ones that women ask, but for men who are accustomed to being the "problem solvers", it can be even scarier to feel that they have very little to no control over the pregnancy's outcome. This perspective is also shared by several families in If Only We ...
Throughout the month of May, the Promise Walk for Preeclampsia has been raising awareness across the country: from Ohio to Florida, Minnesota to Texas, and California to Massachusetts, two dozen sites hosted walks with many of these being first time events. This year's walk season represents the largest effort to date with the most number of major cities and walkers participating, raising over $230,000.
The National Promise Walk team ambitiously raised the national fundraising goal to $225,000 this year. The Promise Walk coordinators took this challenge and delivered. San Jose, Calif., raised more than $30,000 as a first time walk; San Diego, Irvine, Calif., and Davenport, Iowa, were just shy of $20,000 each, while Chicago raised over $26,000 at the second annual Walk-turned CARA (Chicago Area Runners Association) certified 5K walk/run.
All walks included guest speakers such as preeclampsia and HELLP syndrome survivors, researchers and health care ...
The Volunteer Profile column often spotlights our women volunteers, but during the month of June, we are shifting the focus to an amazing group of men. These fathers and husbands have seen first-hand the effects of preeclampsia and HELLP syndrome, but instead of becoming passive observers, they have come to the forefront, volunteering their time, energy and skills.
Board of Directors Chairman Pat Dignan has been a huge supporter of the Preeclampsia Foundation throughout the years, including participating in the 2011 New Jersey Promise Walk and serving as co-chair of this year's Saving Grace gala in New York City.
"I was drawn to the Preeclampsia Foundation back in 2004 for information and understanding, several years after my first wife Donna died from the effects of severe preeclampsia complicated by HELLP Syndrome," Dignan explained. "The need for information, awareness and research about preeclampsia still remains. The Preeclampsia Foundation tries very hard ...
The Preeclampsia Foundation has already made a significant investment into health literacy research in 2009 and 2010, funding and working closely with top researchers and opinion leaders at Northwestern University in Chicago to develop an evidence-based patient education tool that will work with a broad range of patient populations today. That research study has been concluded and is ready to be tested on a wider audience. Research has shown that low health literacy is not necessarily correlated to low socio-economic conditions and that across many health conditions, patients may not have the resources to read or understand in-depth materials, and as a result are not adequately informed.
In addition, there are many education opportunities when pregnant women interact with a variety of care providers - childbirth educators, doulas, midwives, nurse-midwives and the traditional physicians and nurses they encounter in clinics, hospitals and medical offices. Each of those ...
Volunteer of the Month Spotlight - May 2011
Heather Curtis, Community Forum Director
What was your experience with preeclampsia?
I had hypertensive complications and delivered at 37 weeks with all three of my children. I've been very luck that my personal experience with the disease has been mild. I spent one week on hospital bed rest before being induced with my first; I was induced as soon as I was diagnostic with my second; and I was on "house rest" and labetalol from 35 weeks with my third. My highest blood pressures were in the 180s/100s, but I was lucky that those readings were only spikes, and for the most part I stayed in the 140s/90s range. My firstborn spent four days in the NICU because of high MgS04 levels, but my other two babies roomed in with me. They were all small - 5lbs 8oz; 6lbs, 14oz; and 5lbs, 12oz - but today they are all healthy.
How aware were you about pre-e before/during your pregnancy?
I had zero awareness ...
Many of our newsletter readers will participate in or support a Promise Walk for Preeclampsia this May and June. The Promise Walks are one of the biggest fundraisers that the Preeclampsia Foundation hosts: they not only generate funds for the Foundation, but raise awareness about the disease in local communities. For many people, a walk is their first experience with the Foundation - their first time connecting with our community and becoming aware of preeclampsia's devastating impact. This connection is an excellent opportunity to motivate Promise Walk attendees to become year-round Foundation supporters within their local community.
There are many ways you can help get your neighbors, friends and families involved after the Walk is over:
- Encourage walkers to sign up for the Expectations newsletter to stay connected and motivated about our work; to see the impact their contributions are making.
- Host an event to raise awareness or money ...
Upon being diagnosed with any medical condition, it is human nature to ponder, "Did anyone in our family have that?"
This is especially the case when diagnosed with preeclampsia - what our mothers' and grandmothers' generations called "toxemia."
When I was diagnosed with preeclampsia during the 35th week of my first pregnancy, I was mystified and kept thinking: What on Earth is this? I am 27. I run. I eat well. My blood pressure is always a perfect 120/80.
But I have to say before any of these questions surfaced, I looked to my mother and asked, "Mama, did you have that?" She looked at me with tears in her eyes and shook her head no, unable to give me the normal guidance and comfort that mothers so naturally bestow.
One woman that could provide some guidance was my mother-in-law, Kathy Hutchison, who immediately called me upon hearing my diagnosis, being a two-time survivor herself. What were the odds that she too had had ...
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 ...
Raising awareness in 2011 is no easy task.
A recent internet search of awareness efforts in May turned up 22 different causes, from asthma and allergy to stuttering awareness. As yet, the National Health Observances Calendar doesn't include Preeclampsia Awareness Month, although efforts are underway (with Congressional support) to add it.
So what can the Preeclampsia Foundation, an organization that recently celebrated its 10th birthday, learn from more established organizations and their campaigns?
Pink ribbons, red dresses, and yellow rubber bracelets immediately come to mind. Certain trends are prevalent in these successful awareness campaigns: a concerted public relations campaign, a celebrity spokesperson, partnerships with like-minded organizations, but most importantly, a clear message of the impact that a condition has on the American population.
Can an awareness "month" matter as we seek to raise the profile of our ...
Volunteer of the Month Spotlight - April 2011
Autumn Spear, Promise Walk Beat Editor
1. What was your experience with preeclampsia?
At 21 weeks into my first pregnancy with our daughter Sydney, I developed severe preeclampsia and HELLP syndrome and had no idea what was happening. I spent a week in the hospital trying to sort out what was happening at such an early stage in my pregnancy when preeclampsia is not typically seen. When my symptoms worsened, I was transferred to a high risk hospital and forced to deliver our stillborn daughter. It was a horrible and frightening experience. With the help of a maternal-fetal medicine specialist, we were able to deliver a healthy baby boy a year later though I still developed preeclampsia again at 36 weeks.
2. How ...
Have you ever been standing in the checkout line and had the urge to tell the pregnant woman in front of you about preeclampsia? If you follow these three easy steps, you just might be able to help save a life!
Initially, approach the conversation with a flattering question, "Congratulations, when are you due?" then lead in with "Is this your first baby?" Most women love to dote on the impending arrival of their baby. Humor is also a great approach. For example, "You look incredible! When I was in my last trimester I was so swollen from preeclampsia, I couldn't see my own feet." Little conversational volleys get the dialogue flowing in a comfortable direction.
The second step is to segue into your story. When you share a snippet of your life or pregnancy experience, it can provide a perfect opportunity to explain preeclampsia. Newsletter writer Laura Dale transitions into her story by saying, "I have a healthy 3 year old son. He's our miracle ...
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 ...
The countdown to The Promise Walk for Preeclampsia continues with teams and individuals scrambling to secure the most donations. This month we celebrate our top three teams: Scuderia Reyes (San Diego),
Cooper Landon Barnett (San Jose), and Team "Down with BP" (Chicago), all with over $1,000 raised so far!
The top three individuals are giving the teams some stiff competition. Lisa Bloch (San Jose) has already brought in over $1,000 and Sarah Scott (Raleigh) and Stephan Pollitt (San Jose) are already over $500. With a little over a month to go for some of the walks, turn on the heat!
If you've had a hypertensive disorder of pregnancy in a prior pregnancy, deadling with a subsequent pregnancy can be emotionally difficult. Preparation is the key to a positive emotional and physical experience, with the best possible outcome.
Learn: Ask your health care professional for a write-up of your prior pregnancy. Focus on what happened to your body and how your symptoms manifested. Have a preconception check up with a specialist who can test for underlying conditions such as clotting disorders or chronic hypertension. The more you know about what happened to you, the more you can be aware of signs and symptoms should they repeat themselves. Read about all the various signs and symptoms in case preeclampsia presents itself again, but perhaps differently.
Rally Your Support Group: Every pregnancy ends with Mom needing additional help. Add a pregnancy complication and you may wish for a small army at your disposal. Line ...
Spring is near, and many areas of the country are ready to shake off the snow and welcome the warmer weather. Outdoor gatherings such as garden tours, Easter parades, arts festivals and baby item sales seem to appear everywhere you go. Could these be opportunities in your community for distributing preeclampsia materials at an information stand? Email
, Director of Patient Education to learn more about distributing brochures and other patient education materials at your local events.
There are also a variety of fresh ways you can use the season to benefit the Foundation through fundraising: check out the brand new "Top Ten Spring ...
Posted in Heard on the Hill on March 31, 2011 by Administrator
Despite spending more money than any other country on health care, the United States has a higher maternal mortality rate than 40 other countries, with more than two women dying every day in the United States from pregnancy-related conditions, such as preeclampsia and eclampsia. “Near misses” are also important to quantify and understand. According to a 2010 report released by Amnesty International (AI), nearly 65,000 women almost died from pregnancy-related conditions in 2004 and 2005. Approximately 16% of the reported maternal deaths were due to preeclampsia and eclampsia. The AI report also indicated that as alarming as these figures are, they “probably significantly understate” the actual numbers because of the limitation of maternal health statistics currently being captured.
On March 3, 2011, the Maternal Health Accountability Act (H.R. 894) was introduced by Rep. John Conyers (D-Mich) to work toward establishing an accurate picture of maternal mortality ...
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 ...
As many Promise Walk participants know, raising money early in the year can be quite difficult, particularly coming out of the post-holiday slums. Nevertheless, two Promise Walk for Preeclampsia volunteers did not let any excuse stop them from raising the highest funds for an individual and team. Janel Kovarik, the leader of the Chicago “Down with BP” team, raised $750 toward her personal goal of $1000, while Samantha Reyes and her team “Scuderia Reyes” of San Diego have raised an amazing $1,240 to date.
How did these two amazing volunteers do it? Janel, a two-time survivor of severe preeclampsia, explained that for her, it was all about networking with different circle of friends and telling people her story.
“Tell people your story- Tell them! Ignorance is bliss,” Janel explained. Her advice to other teams? Incorporate a ...