By Executive Director Eleni Tsigas
How do you thoughtfully make a decision about medical matters? Especially when there is no clearly prescribed course of action supported by strong research, professional organizations, and universally accepted guidelines? For the majority of us who don't have medical degrees, it's easy to get overwhelmed by the amount of information we are expected to know as a consumer of health care. So, how can you discuss or evaluate potential preeclampsia interventions with your doctor?
Use the BRA formula:
B for Benefit: What's the potential benefit of trying to prevent preeclampsia with low dose aspirin/Lovenox/Atenolol/vitamin D or other interventions -- all with varying degrees of evidence? Could this intervention prevent preeclampsia, delay its onset, or lower your chances of getting it? And when you consider those benefits, make sure you understand the difference between having a 50 percent reduction and a ...
The 2011 Promise Walk has come to an amazing close and the Preeclampsia Foundation is already looking toward 2012! Have you considered hosting or volunteering at a walk? Even if you have just few hours to volunteer, we need you! Join us for the first Promise Walk planning call of the 2012 season on September 13 to learn about what it means to organize a Promise Walk, or email National Walk Director Becky Sloan about how you can support the efforts.
In 2011, Promise Walks were held in 24 locations, and for 2012, we are looking for eager volunteers who are interested in creating even more new walk sites or in volunteering a few hours to help an existing walk be successful. Organizing a Promise Walk is a little like a planning a party…if you’ve put on a birthday party or organized a wedding you are likely qualified to plan a Promise Walk!
There are five main components of helping to organize a successful Promise Walk: Logistics, Sponsorships, Registration, ...
Posted in Volunteer Happenings on August 03, 2011 by Administrator
Planning and organizing a Promise Walk and 5K Run are no easy task, but the contributions of critical sponsors and donors makes it all worthwhile. For the Chicago event, local sponsors do more than contribute financially, as is evident by these diverse conributions:
One of the local Chicago suburban hospitals, Northwest Community Hospital and a stationery company sales associate, Dee Dee McCoy, contributed financially as Gold Sponsors. Runners High 'n Tri, a popular local running store, provided bibs for Walk and race participants and two days of packet pick-up; DJ Eric Rain of Hanover Park and AMP Entertainment kept the crowd upbeat by spinning tunes and entertaining our many families and kids; CTI Industries of Lake Barrington donated more than 100 colorful, helium balloons; WomanCare OBGYN offices of Palatine, donated giveaways for goodie bags and high-dollar raffle prizes, and the local T-Mobile helped staff the day-of registration booth with a hotspot that enabled ...
The live auction at Saving Grace - A Night of Hope is lively and energizing. Shrieks of laughter and good natured competition inspire the audience to interact and bid high, receiving a fun and exciting trip, package or unique experience in return. These prizes are supplied by the overwhelming generosity and connections of our auction donors...individuals and businesses like you!
At this year's New York City Saving Grace on November 12, we plan to again include some fantastic prizes, with proceeds going to fund research and education programs of the Preeclampsia Foundation and the Foundation for America's Blood Centers, but we need your help! The Manhattan planning committee wants to outdo all previous events and is looking for charming live auction items for donation: trips, sports packages, luxury hotel and restaurant accommodations, jewelry, original artwork, are all popular prizes that ...
More than 50 comments emerged from a recent Facebook post to describe how preeclampsia changed the way you live. Women who had delivered prematurely, lost their baby, or lost their adult daughters to the disease responded with various tales about the shortness of life and how nothing should be taken for granted. Together, the posts tell a story of how people learn to live again after being struck by preeclampsia. Many families are given a lifetime of lessons in one fell swoop - complete and staggering and with instant illumination, whereas others acquire the same lessons on a small scale through a series of lifelong events that gradually come together like a mosaic of many pieces. Respondents commented on how their experience "put things in perspective" and how they have a "new outlook on life."
Not surprisingly, for many, it was an eye-opening experience that called attention to the fragility of human existence. One respondent commented, "Now, I see the truth and I am ...
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 ...
This was the biggest year in Promise Walk history, with more walks, more participants, and the most funds ever raised! Promise Walks were held in 24 cities in 19 different states and raised more than $271,000 for the Preeclampsia Foundation, with 2300 participants nationwide. Our largest walk hosted around 300 people. State governors and mayors proclaimed preeclampsia awareness day in 13 states and cities.
Many special tributes and fun features made each walk an inspirational and unique event. Butterfly releases in San Diego and Boston, a dove release in San Jose, survivor sashes in North Conway, personalized mile markers in Chicago, and a special feature with the Field of Cradles exhibit in Boston made each walk inspiring. Some of the fun features included face painting for kids and adults, and specialized desserts like Promise Walk heart cookies and "feet" cakes!
Walk participants at a few locations were treated to special guest ...
Amy Robbins-Wilson, the lullaby singer from Maine who wrote three songs for the “I Gave You Words”/Field of Cradles art exhibit, will be singing for participants of the Promise Walk for Preeclampsia™ in South Boston on Sunday, July 24th. Her performance will be a highlight for both children and adults present at the walk, and will be dedicated to the many babies lost each year, including the babies memorialized in the Field of Cradles exhibit, displayed at this year’s Promise Walk.
The Field of Cradles display is a poignant reminder to all that pass by, a grassy field of empty cradles, each representing a baby that has lost his or her life to preeclampsia. Inside each cradle lies a blanket with a poem on it written to and for that child, while Robbins-Wilson’s gentle lullabies play in the background.
Deeply moved by her involvement with the Field of Cradles exhibit and the words of ...
Whether it's a backyard barbeque in Dad's honor, hot dogs in the park or a play date at the swings, summer is the time to turn off the television and enjoy the easy spirit of extended daylight. It's also when we reconnect with our neighbors and friends... but it can also be a great fundraising and awareness opportunity!
Not only is it fun, but neighborhood yard sales and block party picnics are great chances for people to learn about preeclampsia and contribute to the work of the Foundation. Here's how to enjoy the sun and organize a local neighborhood block party:
- Invite each family to provide a side dish. Ask the manager of your local grocery store, hotdog stand or ice cream shop to donate food, water, or a sheet cake. With enough notice, most will be happy to get behind a community charity event.
- Line up activities like Frisbee, water balloon toss, face painting, basketball, family sack races, or inflatable bounce rental.
- Host in ...
Tiffany Trevers, San Jose Promise Walk Coordinator
What was your experience with preeclampsia?
I became pregnant with our first child at age 32 as a healthy person with no chronic conditions, I was considered low-risk. My pregnancy progressed normally through the first trimester. I began to swell around 22 weeks but thought little of it, that it was part of normal weight gain. As each week passed the swelling increased and my blood pressure, which has run low to normal all my life, began to creep up. At 27 weeks I was formally diagnosed with preeclampsia, and I delivered my son weighing just two pounds at 28 weeks gestation. Rather than improving after delivery, my condition worsened post-partum, as I developed Class I HELLP Syndrome and spent several days in ICU with severe liver issues before stabilizing.
My son spent 76 days in the NICU, and as is common with preemies born that early, spent time on the ventilator, had numerous blood transfusions, had ...
Posted in Research on July 03, 2011 by Caryn
A new study came out this month evaluating supplementation of l-arginine as a means of reducing preeclampsia risk. There was a lot of media coverage – you probably had friends and relatives sending you articles like this – and there’s been some discussion of it on the Preeclampsia Foundation forums as well.
Why did researchers think this might work? Well, partly for the same reason that
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 ...
Posted in Heard on the Hill on June 06, 2011 by Administrator
In late April, the Preeclampsia Foundation continued its federal advocacy efforts, meeting with representatives of the National Institutes of Health in Bethesda, Maryland. Joined by Preeclampsia Foundation Medical Advisory Board member Dr. James Martin, who was recently inducted as the President of the American Congress of Obstetricians and Gynecologists, the Foundation sought to understand the breadth of preeclampsia research being conducted across the NIH institutes and centers.
The Foundation came to the meeting with three simple messages and requests: the institutes should collaborate to share research findings; NIH should report its annual spending allocations dedicated to preeclampsia and related research; and NIH should work with the Foundation and other partners to more effectively improve communication about preeclampsia research findings.
Through its efforts, the Foundation learned that 9 of the 27 institutes/centers at NIH conduct or have ...
On April 14, West Suburban Medical Center (WSMC) in the Chicago suburb of Oak Park, Ill., hosted a unique seminar for nurses eager to learn more about HELLP syndrome. The program's format combined two different patient perspectives with that of Maternal Fetal Medicine expert Dr. Judith Hibbard, a nationally recognized board certified clinician and researcher with expertise in high quality, cutting edge perinatal care. She is a Professor and Director of the Division of Maternal-Fetal Medicine at the University of Illinois-Chicago where she is also Co-Director of the University's Perinatal Center.
Accompanying Hibbard were HELLP survivors Johanna Aiken and Jill Siegel. The personal accounts of the births of their daughters were interspersed with medical information from Dr. Hibbard about what was happening to them at the time.
Aiken gave birth to her daughter Macy in 2003 near term but was diagnosed with HELLP syndrome thanks to the diligence of her admitting nurse ...
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 ...