The October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.
These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).
In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any ...
Posted in Volunteer Happenings on March 05, 2012 by Website
What was your experience with preeclampsia?
In my first pregnancy I wasn't worried about PE at all; everything was going smoothly until 31 weeks when, at our last childbirth class on a tour of the hospital's Labor & Delivery (L&D) ward, I started having painful contractions. We ended up calling my OB from the hospital parking lot and she told us to go back up to L&D where they hooked me up and determined - yes - these were real contractions & I was starting to dilate. Many hours of monitoring and couple shots of terbulaline later they sent me home. I ended up at my 37 week appointment, being sent over to L&D for an induction because of preeclampsia.
How aware were you about preeclampsia before/during your pregnancy?
I'd never really heard of preeclampsia before my first pregnancy. During my pregnancy as I started having high BP sometime around 34 weeks it got mentioned and I knew there were some ...
In the words of 17th century English poet John Donne, "No man is an island"... and in the world of fundraising, this is doubly true. The incredible success of the Promise Walks each year is due in no small part to the ability of local walk coordinators and participants to gather their friends and families together and spread the infectious hope for the future that is at the fundamental core of the Promise Walk.
But how does a walk move from helping the Foundation fund a single local education campaign (around $2,000) all the way to funding an entire Vision Research Grant ($25,000)? The answer is the passion and drive of team work! So if you haven't already, start a team and read the following tips on making a big difference:
1) Have a Plan. Set a reasonable goal and make a list of people who would potentially support your efforts. For instance,
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 ...
Posted in Research on March 01, 2012 by Caryn
Is there a nutritional connection to preeclampsia? That idea seems plausible at first, as when the blood samples of women have been analyzed, some researchers have found altered levels of various vitamins and minerals. Furthermore, preeclamptic women have altered patterns of weight gain during pregnancy; and obese women are more likely to develop preeclampsia.
Such considerations may lead one to speculate that certain diets may prevent or reverse the disease, in which case the appropriate diet becomes a therapeutic intervention. However the best research to date suggests this just isn't so.
Posted in Volunteer Happenings on February 06, 2012 by Website
For Dallas-area volunteer Nicole Purnell, fundraising for the Preeclampsia Foundation is nothing new: she is currently in her fourth year as the Dallas-Ft. Worth Promise Walk Coordinator. So when she and her family decided to do another fundraiser for the Foundation, they decided to try something entirely different, and catered to their home state of Texas: a clay-shooting tournament to be held March 10.
"Of course, I realize that shooting clays is not an activity for everyone's taste, but this IS Texas after all!" explained Purnell. In organizing the event, she and her stepfather, who is co-hosting the tournament, realized that this would be a unique opportunity to pull in a different crowd than that of the Promise Walks for fundraising and awareness.
"My stepdad is a retired Navy SEAL and has many friends who enjoy clay shooting," Purnell said. "I had been wanting to do a clay shoot event for some time, and then, one day I got my daily Groupon ...
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 ...
Posted in Volunteer Happenings on February 04, 2012 by Website
Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.
For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal ...
Our seventh annual Saving Grace dinner gala fundraiser took place in Manhattan on the evening of Saturday, November 12. It was simply a wonderful evening, replete with raw emotion, inspirational stories, hope and gratitude. Together with The Foundation for America's Blood Centers, another worthy charity dedicated to saving the lives of mothers and babies, we reached a broad and extremely engaged audience of almost 500 guests. With the support of so many individuals and our event sponsors - Johnson & Johnson, Ortho Clinical Diagnostics, Merck, Abbott and many others - we grossed nearly $550,000 to support the vital missions of our organizations!
Our theme this ...
Posted in Research on December 04, 2011 by Caryn
Currently there's no way to know for certain whether preeclampsia will develop during any given pregnancy. This leaves pregnant women and their care providers with little choice but to wait for symptoms to appear... dangerous symptoms that mean the disease has progressed to the point where mother and baby are critically ill and will need intensive monitoring and carefully timed delivery to protect their health and lives. The only screening method to date is to measure those symptoms when they appear.
Early detection wouldn't be a treatment. But what if a screening test could let us know, weeks or even months in advance, that we'd probably be getting ill? Knowing might change the way we seek care - possibly choosing specialist care providers with the education and experience to manage medically complicated pregnancies. Women in parts of the world (like
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 ...
Posted in Volunteer Happenings on October 31, 2011 by Website
Becky Sloan, National Promise Walk Director
What was your experience with preeclampsia?
I began experiencing face and body swelling and headaches at 22 weeks. These symptoms, along with extreme weight gain, bouts of high blood pressure, and lower fetal movement continued until 31 weeks. My doctor was never concerned with my symptoms and told me, "If you don't stop gaining weight, you'll gain 70 lbs. before your pregnancy is over." I didn't make it out of the office before I burst into tears. I felt awful, like no one cared how I felt, and I still had no idea what preeclampsia was because the signs and symptoms were never mentioned to me. I was never diagnosed with anything more than ...
Posted in Preeclampsia Information on October 05, 2011 by Website
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!
Posted in Heard on the Hill on October 05, 2011 by Website
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 ...
Posted in Media on October 05, 2011 by Website
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 ...
Posted in Preeclampsia Information on October 05, 2011 by Website
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 Website
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 Website
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 ...