Some of the most important participants at the Promise Walks for Preeclampsia are healthcare providers who come out to support the Foundation. Many are community physicians and nurses who treat preeclampsia on a regular basis. The Promise Walk is an annual event held in numerous cities that allows the preeclampsia community to come together and mourn their losses, celebrate their hopes, and work together toward the common goal of raising money to fund research and create awareness.

Many Promise Walks invite healthcare providers to speak about their own professional experience with preeclampsia. That provider brings their own professional validation to the need for awareness and research, while giving attendees hope, knowing that there are medical professionals working diligently to solve the "preeclampsia puzzle."

So what causes these health care providers to be so passionate for the preeclampsia cause and to join our efforts at the Promise Walks? To provide ...

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 ...

As a woman, you may feel that you are expected to do it all: career, family, community responsibilities.  A high-risk pregnancy can make those responsibilities seem especially magnified as you try to square everything away before taking maternity leave or while on bed rest.   For women facing a high-risk pregnancy (whether because of a previous preeclampsia experience or for other concerns) and caught up in the "Super Woman" mentality, you can lose sight of your own needs, goals, and most of all health.  It can be challenging to make time to take care of you, a fact to which many preeclampsia survivors who missed the warning signs will attest. The day can slip away without taking a break to assess your physical and mental well-being. Nevertheless, for a patient who may face potential pregnancy complications, focusing on your care should be paramount!

The Foundation is closely tracking and providing perspective to Congressional efforts related to maternal and neonatal health and well-being, especially as they may impact preeclampsia awareness and related care.  Two pieces of legislation of interest are the PREEMIE (Prematurity Research Expansion and Education) Reauthorization Act and the Birth Defects Prevention, Risk Reduction and Awareness Act.

The PREEMIE Reauthorization Act, sponsored by Reps. Leonard Lance (R-NJ), Anna G. Eshoo (D-CA) and Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO), would expand research, education and intervention activities as they relate to preterm birth.  The legislation will also work to promote the use of evidence-based standards of care for pregnant women.  The original PREEMIE Act was signed into law in December 2006, and the programs supported through the law at the Centers for Disease Control and Prevention and other federal agencies and subsequent resources provided to ...

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 ...

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 ...

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