Posted in Media on October 05, 2011 by Administrator
I have always been a fan of the movies; I enjoy escaping into a dark theater to watch a story unfold before me on the big screen. In fact, I am sitting down to write this after enjoying a trip to the movies with my family to see Dolphin Tale, a terrific story that had my six-year-old daughter both enthralled and teary-eyed when she saw the hurt dolphin who we would come to know as Winter. I hope some of the passion and determination exhibited by Sawyer Nelson (played by Nathan Gamble) sunk in with her and she will someday find her own calling (other than Barbies!) that inspires her in a similarly compassionate and blindly hopeful way.
True stories can be more mind-blowing to an audience and more captivating to Hollywood filmmakers than fiction. These films - and their stories - in turn, can motivate others to act in inspired ways. In particular, big screen messages of medical empowerment can have an impact on audiences. The real life inspiration for the film Lorenzo's ...
Are you someone who has faced the loss of someone you love because of a hypertensive disorder of pregnancy? Perhaps it was your child or your spouse, a close friend or relative. Whatever the relationship, aside from the pain of the loss, you may also be confronting feelings of guilt or shame.
You may wonder 'Why did I survive and my child did not?', or 'Why did my child survive and my friend's child perish when we both went through a similar circumstance?' You may even feel responsible for the death by thinking there must have been something you could have done to change the outcome. Processing these feelings can be isolating, hurtful and leave you wondering how to go on with life. This is known as survivor guilt.
As devastating as your situation may ...
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 ...
Posted in Volunteer Happenings on September 05, 2011 by Administrator
1. What was your experience with preeclampsia?
My partner and I had tried for a couple of years to conceive our first child, and finally succeeded in 2009. I felt fabulous during the pregnancy, except that I developed an annoying cough that got more frequent and more productive as the months went on. I mentioned it a hundred times to my doctor, but he always shrugged it off, saying pregnant women often have excess mucus. At 7 months along, I expressed concern to my doctor that I had only gained 12 pounds, but again, he said it was not a problem. Based on my gut instinct that something wasn't right, I insisted on an ultrasound that day, which showed my son was severely growth restricted. He was delivered that night (at 31 weeks) via c-section. He weighed 1 lb 15 oz. We named him Mack. Despite showing all signs of doing great for over a week, Mack developed an infection in the hospital and died when he was 10 days old. I was later diagnosed with postpartum preeclampsia (high ...
Posted in Research on September 01, 2011 by Administrator
Filtering the Factors
A new therapy may be developed for very preterm preeclampsia patients, if the results of a small pilot study are confirmed in a larger trial. Researchers have been looking for a safe way to prolong pregnancy by at least the 48 hours needed to allow steroid shots to mature fetal lungs. (Each safe extra day in utero eliminates two or three days in NICU, and means higher survival rates for many of the babies affected by preeclampsia.)
In 2003 a paper published by Dr. Ananth Karumanchi in the Journal of Clinical Investigation presented evidence that a protein named soluble fms-like tyrosine kinase (sFlt-1) caused many of the symptoms in preeclampsia. Karumanchi studied the placentas from preeclamptic pregnancies and found that they were producing far more sFlt-1 than the placentas from normal pregnancies. The protein binds to another protein and compromises the repair of blood vessels, leading to many of the symptoms such as ...
Losing a child is one of the hardest life experiences anyone can endure and can be difficult for other to understand. Add in the trauma of preeclampsia and your emotional shoulders may not be big enough. Who can you turn to that really understands everything you have gone through? The Preeclampsia Foundation offers several avenues of support.
The Patient Support Network is made up of volunteer members that have each lost a child. Each member has a different experience and viewpoint that enables the network to offer specific support based on each family's circumstances. Since its creation in February, the group has responded to 13 families that have recently lost a baby due to preeclampsia. Through condolence cards, phone calls and emails, the group listens and walks besides families during the darkest days of their grief journey. To contact the Patient Support network, simply call our toll-free line at 800-665-9341 or email
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 ...