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When we think about maternal deaths, visions of thin, malnourished women lying on cots in thatched-roof cots immediately come to mind, when in fact they occur right in our backyard. In the U.S., preeclampsia is one of the four most common reasons for maternal death. On an average, there is approximately 1 maternal death for every 100,000 births, but for African American women, this number triples. African American women are three times more likely to die from preeclampsia and other childbirth-related issues and no one knows why.
As our society becomes more culturally diverse, this problem will indirectly affect all of us. Our daughters and granddaughters may no longer look like us ethnically but carry genes that places them at risks for complications associated with a particular race. While we attempt to unravel the mystery of what causes preeclampsia, an equally mystifying dilemma is to determine why are African American women more at risk for developing and then dying ...
Posted in Volunteer Happenings on January 30, 2013 by Administrator
Terrell and Kimberly Smith began 2012 with joy and anticipation as they planned for the arrival of their baby girl. But on March 12, they received the worst news of their lives: Kimberly's blood pressure hit 200/100 and her vitals were rapidly deteriorating. Their baby girl, Lauren Kelly, was gone at just 22 weeks due to severe preeclampsia.
The Smiths refused to let their tragedy go unheard: Kimberly reached out to the Preeclampsia Foundation and asked what she could do.
"South Carolina has never held a Promise Walk before, and even in conversations with various public health professionals, pregnant women, and women impacted by preeclampsia, many had not heard of the Preeclampsia Foundation," explained Smith. So she decided her goal was to bring awareness and support to the "wonderful work the Foundation is doing throughout our nation" by bringing the Promise Walk to her home state.
She has since partnered with local health care providers throughout the ...
Related posts: volunteers
Five weeks ago, the Preeclampsia Foundation led a historic gathering of nine companies, as well as some of the leading clinicians and researchers in the field of preeclampsia. We also had leaders and front line obstetricians from outside the "inner circle" to ensure we weren't doing too much naval gazing.
This Biomarker Consortium was evidence of several of our core values: we wanted to be influential, catalytic and bold. As the patient advocacy organization caring passionately about improving pregnancy outcomes, we were uniquely positioned to invite and get positive responses from every company who has or is investing in biomarkers as a more advanced technology to diagnose preeclampsia or screen pregnant women for future disease.
I was energized by the ideas and commitment in the room, by the spirit of collaboration and the recognition that together we can do much to advance the momentum and attention on preeclampsia. A report is being developed ...
Posted in Volunteer Happenings on January 10, 2013 by Administrator
It is the time of year where I spend quite a bit of time reflecting. Since our son's angelversary was December 28th, it's natural to think not only of the past year, but also of the time our lives changed forever. It has been 7 years now since that day and I can honestly say that I would have never believed I would be where I am today. A few weeks after the loss of our son, I was researching on the internet to figure out what happened to me when I found the Preeclampsia Foundation. It was perfect timing to bond with other bereaved parents on the forums. I found healing through the community of sharing our losses and our grief. It was easier to bare knowing there were others I could turn to that had experienced the same devastation. I spent alot of time on the forums and through my time there was where I felt the need to give back. I made it through the blackest of days thanks to those ladies. I knew if I could do it, so could others. I not only wanted to help families avoid my ...
A nurse from the University of Illinois Medical Center asked the Preeclampsia Foundation, "What do you think we, as nurses, could do to support patients when they are in a situation (preeclamptic pregnancy) similar to yours?"
We wondered aloud and nearly three dozen survivors responded via Facebook and our online Community Forum to share their experiences and provide their suggestions to the nursing profession. While there was very vocal appreciation for the majority of nurses who have cared for our women, there were also many helpful suggestions. Based on patient input, here are:
Top 10 Ways Nurses Can Support Preeclampsia Patients:
1. Know the symptoms, educate your patients. Know how dangerous preeclampsia can be, know the full breadth of possible symptoms, and be proactive about diagnosing and managing it. The Foundation's motto "Know the Symptoms, Trust Yourself" is targeted at pregnant women, but as healthcare ...
Keri developed severe preeclampsia at just 24 weeks pregnant and was forced to deliver her baby shortly thereafter.
Her baby girl Millie was extremely premature and weighed just 1 lb. 1 oz. She needed intensive medical care and Keri was by her side day and night.
A few days after Millie's birth, Keri set up a CaringBridge site to stay in touch with loved ones. "I had so many friends, co-workers and family members who wanted to know how to support me and who were asking for information about how Millie was doing," said Keri. "One hundred percent of my time and energy - emotional, mental and physical - was being spent on my baby and I had nothing left with which to reach out to people."
CaringBridge patient websites make is easy to share health news and receive support from everyone who cares. Using ...
Related posts: patient_support
The "Ask the Experts" section of the Preeclampsia Foundation's Community Forum has 318 questions answered by members of our medical board - top researchers and clinicians in hypertensive pregnancies.
Readers often visit this section, not for definitive answers to any one particular question, but to provide spark ideas about other topics or terms to search, and especially new questions to ask your doctor. The Experts answer anonymously and do not give medical advice on any specific case, but they do contribute to the ongoing discussion of preeclampsia-related topics. Information in the older links may not always reflect current understanding of the disease or today's management practices.
Here are Forum Director Heather Curtis' top 5 tips for using our ...
Encore Public Relations was named a Bronze Stevie Winner in the PR Campaign of the Year/Community Relations category in the 9th annual Stevie® Awards for Women in Business on November 9 for their work with the Preeclampsia Foundation. Encore Public Relations lead strategy efforts and execution for a multi-platform campaign that raised awareness during the 2012 annual Promise Walks for Preeclampsia across the country.
"Ironically, it was during this same weekend last year when we had the good fortune to meet Laurie and Elaine in New York City," said Eleni Tsigas, Preeclampsia Foundation's executive director. "The women were in town for another honor they were receiving and via wonderful circumstances, we were brought together at Saving Grace, our annual benefit gala."
Laura Archbold, principal of Encore Public Relations, upon receiving their award, said. "We humbly accept this honor on ...
Posted in Volunteer Happenings on December 05, 2012 by Administrator
 What was your experience with preeclampsia?
On February 17th, 2005 I was so blessed to become a mom to a beautiful, blue-eyed, baby boy. Roddick was born 2 weeks early, by emergency c-section, due to my blood pressure staying elevated, even with bed rest. My husband was out of town for work, so he missed the birth of his 1st child. It was crazy, nurses and doctors running around trying to get me into surgery and deliver my son. Much of the delivery was a blur. They had me on and off mag sulfate to control my bp. I felt so awful, I kept thinking that this surely couldn't be what it felt like to be a new mom. I felt so bad that I didn't even have the warmth and compassion I ...
Posted in Health Information on December 05, 2012 by Administrator
By Dr. Anne Wallis ~ Who remembers the first season ER episode "Love's Labours Lost"? The answer: pretty much anyone who ever watched ER! In the episode, a pregnant woman presents to the emergency room with a complaint of bladder problems, has a seizure and later dies. This was my first exposure to the hypertensive disorders of pregnancy. Eclampsia is, thankfully, rare, but it carries a high case fatality rate for the mother and/or the infant. Gestational hypertension and preeclampsia are far more common, affecting between 5% and 8% of all pregnancies in the US. Moreover, these conditions are on the rise and globally, these conditions are a leading cause of maternal and infant illness and death.
Obstetric providers are acutely aware of the dangers of preeclampsia because of its potential severity and rapidity of onset and progression, making high-quality prenatal ...
Related posts: Awareness, intervention, patient_education, protocols, research, study, patient_support, maternal_morbidity, maternal_mortality, health_care_providers, statistics, empowered_patient
You can't open your email or your mailbox without receiving a solicitation from another worthy charity. A recent email I received warned of giving to certain charities that spent too much on their administrative costs or paid their CEOs exorbitant salaries, but unfortunately did nothing to help me objectively evaluate a charity's actual status, mission and financial records. It's easy to become a cynical philanthropist when unvetted alarmist messages hit your inbox. The recent Powerball Lottery got me daydreaming about winning and becoming a big ticket philanthropist. Being the steward of half a billion dollars is a huge responsibility. Of course, being the steward of even a much smaller amount is also a responsibility. How can we sit down with a checkbook and a stack of requests and feel good about our end-of-the-year charitable gifts?
I was thrilled to be able to announce to resounding applause, "It's official! The US Department of Health and Human Services has declared May National Preeclampsia Awareness Month!" at our annual benefit dinner, Saving Grace - A Night of Hope, on Friday, Oct. 26, in Point Clear, Alabama. The intimate evening was hosted by Leslie Weeks, former board member of the Preeclampsia Foundation and Owen Bailey, hospital administrator for University of South Alabama's Children's & Women's Hospital.
Board members and long-time volunteers of the Preeclampsia Foundation flew in from around the country to take part in this annual benefit dinner, this year held in a beautiful and tranquil setting, the Sonny Hill Polo Complex. A buffet style dinner was held in the beautifully appointed pavilion, followed by a program under a delicately lit tent that overlooked the water. Dr. Gabriella ...
 Shelly Bridgewater was 25 years young when she died in 2005 from preeclampsia. Her best friend, Bree Housley, wrote a book about their unlikely friendship and the impact Shelly, "the social butterfly," had on her life. We Hope You Like this Song launches this week and is available in our Marketplace. We talked with Housley about inspiration, Karaoke, and how the Preeclampsia Foundation helped her healing.
What inspired you and your sister to embark on your yearlong tribute to Shelly ...
Posted in Volunteer Happenings on September 30, 2012 by Administrator
1. What was your experience with preeclampsia?
I developed HELLP Syndrome in 2009. Not knowing the symptoms of HELLP delayed my response to getting help faster. I went to the ER after three days of right upper quadrant pain (which I was told by the doctor on call that it was probably my gall bladder even though I was on bed rest for high blood pressure), difficulty breathing, and a sense of just not feeling well. I was told by the Labor and Delivery nurse I had made it just in time. When I arrived my platelets were dangerously low, my liver was enlarged and my blood pressure was high. They feared I was going to bleed out during delivery and prepped me for a transfusion. There is no scarier feeling than feeling like you might die during what is supposed to be the happiest time in your life. I delivered my son, Cooper, at 36 weeks. He was only 4lbs 13 oz. Although he was tiny and his platelets were low, he miraculously did not have to go into the NICU. We ...
Preeclampsia Foundation volunteers in different parts of the country have been taking advantage of Perinatal Outreach Educator Networks to disseminate information about the Preeclampsia Foundation and advocate for more patient education.
An unexpected outcome from one of these discussions came from Maripat Zeschke, RNC-EFM, MSN, LC who is the Perinatal Network Administrator at the University of Illinois Administrative Perinatal Center. She asked a simple, but powerful, question of the preeclampsia survivors who were presenting: "What do you think we, as nurses, could do to support patients when they are in a situation similar to yours?"
Zeschke said that her question "comes from a long history of being committed to patients. Nursing is the perfect blend of art and science, and being at the bedside is the essence of the art. I've seen so many patients with devastating preeclamptic stories, and I think it's amazing when survivors can relive it on a regular ...
Posted in Research on September 30, 2012 by Administrator
Principal Investigator Nihar R. Nayak, DVM, PhD, Stanford University, recently reported successful progress in his efforts to better understand the role of certain placental proteins in the development of preeclampsia. His 2011 Vision Grant research project aimed to see how proteins act in the placenta during preeclampsia. In Nayak's multi-stage investigation, he first needed to develop a new method using a mouse model system to study the roles of specific proteins in placental function and disease, as well as testing novel therapeutic approaches to preeclampsia. In his model, protein expressions can be seen in all stages of pregnancy.
Nayak's team has also developed a way to study how genes act in the placentas of mice. Genes play an important part in the development of the placenta during pregnancy. Better ways to see how abnormal genes act will help us learn more about what causes the amount of certain proteins to be higher ...
A recent study in the September 2012 issue of Obstetrics & Gynecology took a look at the seasonal flu vaccine, recognizing that many women are concerned (check out our forum posts about it, here and here) about introducing any drugs or vaccinations during pregnancy.
During the 5-year study period, over 10,000 women received the seasonal influenza vaccine while they were pregnant, a few ...
By Dr. Linda Burke-Galloway ~ October is Patient Centric Care Month, a term you will likely see more of as our healthcare system moves further into the 21st century. What does 21st century healthcare look like? It means that all of your records will be computerized and not on paper. It means that you will receive your "chart" on a flash drive so that when if you leave your physician's office and go to a hospital, your health records remain with you. Gone will be the days when your labs will have to be repeated because no one can locate your prenatal chart. Repeating labs is not only annoying, it's costly.
"Patient Centric Care" means that the emphasis will no longer center on your physician. Or a hospital. Or an ambulatory care center. It will be centered on you, the patient. Why? Because at the end of the day, if you're not well, if the outcome was less than expected, then the system has failed. The $2.3 trillion dollars spent each year on healthcare has not ...
Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!
However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.
An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, ...
Posted in Health Information on September 04, 2012 by Administrator
A recent Preeclampsia Foundation survey reveals that most women feel that books that provide complete and accurate information about preeclampsia would help them approach their pregnancies as empowered patients. The survey, conducted as a follow-up to the May release of the Preeclampsia Foundation's Report on the Top 10 Pregnancy Books, asked women about the pregnancy books they used during their pregnancies and about their feelings regarding the preeclampsia information contained in those books.
All respondents were entered into a contest to receive a signed copy of one of the top 3 books and a Preeclampsia Foundation gift basket. Congratulations go to Melissa S., Teri P., and Laura R. for winning the random drawing!
Not surprisingly, the majority of respondents (69%) reported that they relied on the bestselling What to Expect When You're Expecting by Heidi Murkoff and Sharon Mazel ...
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