Posted in Volunteer Happenings on August 03, 2012 by Website
What was your experience with preeclampsia?
I had preeclampsia with both of my pregnancies. With my first child, I was not made aware of the symptoms of this condition, so when I started having side pains, I just thought I had a cramp, nothing serious. I had gained a significant amount of weight, but had no basis of comparison, so I believed it to be just the nature of being pregnant. I went from 115 lbs to 180 lbs and assumed that was normal. I was swollen, short of breath, and generally unhappy. By the time the high blood pressure became a threat, it became significantly high. Because my proteins showed up during a routine visit and at about 28 weeks, I was put on bed rest, and was administered Labetalol to manage my blood pressure. After I gave birth at 35 weeks with my eldest daughter, I was told I had been preeclamptic but that it was "not a big deal." I was reassured it does not necessarily happen with every pregnancy, so I was told, for my next ...
Posted in Research on August 02, 2012 by Caryn
The hypertensive complications of pregnancy are divided into four distinct classifications: Preeclampsia/eclampsia, Chronic hypertension, preeclampsia superimposed on chronic hypertension, and gestational hypertension. Many people are perplexed by the term "superimposed preeclampsia" which is preeclampsia complicating hypertension of another cause, most commonly chronic or "essential" hypertension. However women with hypertension associated with ...
Posted in Volunteer Happenings on July 02, 2012 by Website
This month, we highlight the volunteer efforts of Stacy Vallely, whose fundraising team "Ty's Team" raised an astonishing $10,300 for the Boston Promise Walk! Stacy raised $5850 herself, making her the highest individual fundraiser of all the Promise Walk participants. We asked Stacy a couple questions about her involvement with the foundation.
1. What was your experience with preeclampsia?
I started to swell pretty early on. I remember thinking that I couldn't believe that I had to take my rings off before the 3rd trimester. Then when I started to feel funny. I called my midwife and expressed concerns about preeclampsia because of the swelling. She asked if I had any headaches? No. Any vision changes? No. She told me that they don't usually worry about preeclampsia until 36 weeks and I was just 26 weeks. My blood pressure at our last appointment was fine, so I should "put my feet up and I will see her in a little ...
Posted in Heard on the Hill on July 02, 2012 by Website
Last week, the Supreme Court upheld the constitutionality of The Patient Protection and Affordable Care Act, otherwise known as the "health reform law." This means that implementation of this landmark legislation can continue to move forward. However, the law continues to be the subject of debate through this year's presidential and congressional election cycle, and depending on the election results could be altered by Congress and the White House in the future. As it currently stands, the law directly benefits childbearing women and newborns by:
- prohibiting the use of pregnancy as a preexisting condition by health insurance providers;
- widening access to certified nurse-midwives by eliminating inequities in how they are reimbursed under Medicare;
- paying for home visits by nurses for at-risk families during or after ...
Posted in Heard on the Hill on July 02, 2012 by Website
While the 2012 campaign cycle has been drawn out for months, primary season is beginning to wind down, and the choices of candidates for the general election in November 2012 have become more apparent. Voting is an important civic responsibility, and making an informed choice when voting is essential. Below are some tips to help you research candidates' positions on issues that are important to you.
- Decide what issues and qualities are most important to you. Is it health care, the economy, or foreign policy? Think about what personal qualities you think are important: past experience, previous leadership or political positions, or personality.
- Visit the candidates' websites - either their official website if they already hold office or their campaign website - to find out their stances. Candidates generally have an "issues" section where they address major policy topics.
- Presidential candidate sites: http://www.barackobama.com and ...
Thirty-five volunteer-driven walks took place across the country, twelve of those in new cities, and the national fundraising goal of $400,000 was surpassed before the last walk took place.
"There were so many highlights and accomplishments this year that it's hard to know where to start!" said 2012 National Promise Walk Coordinator Becky Sloan. "We increased national awareness, especially through new media spots, proclamations and local elected officials who gave their time to acknowledge Preeclampsia Awareness Month at many walks. We also saw an overwhelming dedication of new and continuing volunteers that came out in droves to help our coordinators."
Many walks exceeded their fundraising goals, including Boston, who set a goal of $16,775 and raised an astounding $29,316; and Oklahoma City, who set a goal of $8,400 and raised an amazing $15,680. Other cities that far exceeded their goals included Leigh Valley/Easton who exceeded their goal by $3,000; ...
As the temperatures continue to rise this summer, we look south of the border to a grandmother making a difference all the way from the beaches of the Caribbean. For years Sandy Coder has collected sea glass from the beaches near her house in Mexico. After lots of practice drilling tiny holes in the glass, she created the first "Eva's Angel" in memory of her granddaughter that was lost prematurely at 22 weeks due to preeclampsia and HELLP in 2007 (
Posted in Heard on the Hill on June 05, 2012 by Website
On May 24, 2012, the U.S. Senate passed the Food and Drug Safety and Innovation Act, which reauthorizes funding for activities related to the drug and device approval process at the U.S. Food and Drug Administration (FDA). The legislation also includes requirements and provisions for faster review of new and innovative therapies in order to allow patients to be able to access these therapies more quickly. The next step is for the U.S. House of Representatives to pass the bill, and then a final bill will go to the President for signature.
During debate on the Senate bill, Senator Mark Warner (D-VA) spoke on the necessity of finding ways to strengthen and improve the FDA’s review process of new and innovative diagnostic tests, including biomarkers. While biomarkers are not specifically addressed by the legislation, during his remarks, Senator Warner specifically cited preeclampsia as an example of why the country needs to move biomarkers forward and develop a ...
That was my goal with the once-in-a-lifetime opportunity I was given to present one of three President's Program lectures at the American College of Obstetricians & Gynecologists' Annual Clinical Meeting.
"Patient Perspectives on Preeclampsia" - or as I joked, "lessons from this side of the stirrups" - was well-received by the standing-room-only crowd in the main auditorium of the San Diego Convention Center. More importantly, the many comments I received after the lecture satisfied me that I achieved my objective - to reach their hearts with compelling, real-life stories illustrating the impact preeclampsia has on mothers, fathers, and babies; and to reach their minds by inspiring clinical practice behaviors that include educating each and every expectant mother with non-alarmist, but sound information about the ...
Posted in Preeclampsia Information on June 05, 2012 by Website
Professors Chris Redman and Isabel Walker, co-authors of Pre-eclampsia: The Facts (Oxford University Press 1992) and co-founders of Action on Pre-eclampsia (APEC) in the UK, are seeking input from members of the Preeclampsia Foundation for their latest book, The Pre-eclampsia Survival Guide.
The new book, also co-authored by Joyce Cowan, a midwife who is Director of New Zealand APEC (NZAPEC), will be a comprehensive guide to pre-eclampsia for women and midwives. It will cover everything from historical theories to current treatments; from causation to detection; from prevention to management. It will be rooted very firmly in the real experiences of women who have suffered pre-eclampsia - and that's where you come in.
The authors are keen to illustrate their key points with real life case histories gathered from several different parts of the world. You could be part of this process by contributing to
Posted in Volunteer Happenings on June 05, 2012 by Website
By Jill Siegel ~ As Father's Day approaches, I feel honored to be able to give a very personal shout-out in this newsletter to my husband and our daughter's father, Jeff Siegel. There are so many Preeclampsia Foundation fathers, husbands, and partners who are often 'silent partners' in our volunteer efforts. Any one of them - pick a name: Dan Sloan, Tim Purnell, Todd Beadle, Demetri Tsigas, Jason Drews, Kurt Detweiler, Jay Weeks, Tim Aiken... and the list could go on and on - could be profiled here. For one, I have to laugh when I recall Tim Aiken's help at the 2011 Chicago Promise Walk and 5K Run. Due to a misunderstanding with one of our vendors, he and I found ourselves driving in a car along a bike- and pedestrian-only path in order to mark our course!
I am sure all the many 'silent partners,' like Jeff, have schlepped more than a few tables to a Walk, occupied a child or overlooked household chores so their partner could take another volunteer ...
Posted in Preeclampsia Information on April 30, 2012 by Website
Findings from several studies support the hypothesis that stress caused by a traumatic pregnancy and delivery can often override the ability to emotionally cope, leading to psychiatric complications such as post-traumatic stress disorder (PTSD) and post-partum depression (PPD). The combination of suffering a serious illness, combined with an unexpected caesarean section, birth of a premature child, or infant loss, is a heavy burden to bear both physically and psychologically.
Preliminary research findings, including a study initiated by the Preeclampsia Foundation, suggest that women who have endured traumatic pregnancies such as severe preeclampsia, eclampsia and HELLP syndrome have a higher incidence of PTSD and PPD than women without these complications. More research is needed to help move this information to clinical practice, but anecdotally enough of our survivors are impacted, that we offer these recommendations based on general trauma recovery practices.
May and Mother's Day are so intertwined that it's hard to think about one without the other, especially here at the Preeclampsia Foundation, where we've built a nationwide campaign at www.promisewalk.org/campaign to get the word out about preeclampsia - the "thing" that for many survivors turned our entrance into motherhood into a nightmare.
I believe celebrating mothers is a commemoration of extremes. Not just because preeclampsia is an extreme condition, but because the mothers I am ...
Posted in Volunteer Happenings on April 05, 2012 by Website
What was your experience with preeclampsia? I developed a life-threatening case of severe preeclampsia in 2002. My daughter was delivered by emergency C-section 2 ½ months early weighing 3 pounds and measuring 14 inches long. In my case, delivery did not relieve my symptoms and I spent time in the ICU with a pulmonary artery catheter in my neck, unable to see or hold my daughter for her first days of life. Even with extremely high blood pressure, incredible headaches and pulmonary edema, my doctors released me on two separate occasions. Each time I had to be re-admitted within hours, with slurred speech, vision problems, and tingling in limbs. In total, I remained in the hospital on magnesium sulfate for about three weeks as the preeclampsia continued postpartum. My daughter came home after 30 days in the NICU.
How aware were you about pre-e before/during your pregnancy? I was not familiar with preeclampsia other than maybe a brief ...
Posted in Heard on the Hill on April 04, 2012 by Website
During the week of March 26, 2012, the Supreme Court of the United States heard arguments about the constitutionality of the Patient Protection and Affordable Care Act (ACA), otherwise known as the Health Reform Law. As the Preeclampsia Foundation continues to advocate before state and federal policymakers on maternal health issues, we are watching closely to understand what affect the Court's decision(s) will have on women and their families.
The following is an overview of the key questions being considered by the Court after three days of debate - the longest hearing on a single case heard by the Supreme Court since 1966.
Should the law even be considered by the Court at this time - the Anti-Injunction Act? The court must determine whether the case can be decided now, or whether the court must wait until 2015, when the tax provisions of the law (individual mandate requiring individuals to purchase health insurance) go into effect. ...
Posted in Research on April 04, 2012 by Website
At the Society for Gynecologic Investigation (SGI) Annual Scientific Meeting in San Diego, Calif., in March, the Preeclampsia Foundation, in collaboration with lead authors Dr. Ineke Postma, Dr. Gerda Zeeman, Dr H. Groen of the University Medical Center Groningen, the Netherlands, and Dr. Thomas Easterling of the University of Washington, presented a poster on cognition, quality of life and social functioning after a hypertensive pregnancy. Many formerly preeclamptic women report difficulties with memory or word choice postpartum, but so do many women with normal pregnancy courses. The unanswered question: what is the likelihood that preeclampsia causes brain changes independent of pregnancy itself? If there are preeclampsia-specific changes, can those be separated from the trauma of a medical crisis?
Enrolling more than 1,000 participants in this study, the Preeclampsia Foundation's survey queried women with (cases) and without (controls) a history of hypertension in ...
The Promise Walk for Preeclampsia means something unique to each participant across the country... but this year for one young preeclampsia survivor, it means getting to see her artwork impact thousands!
Mya Detweiler, age 10, and her mother Dawn are no strangers to the Preeclampsia Foundation, or the Promise Walk. After experiencing severe preeclampsia and a harrowing premature delivery, Dawn turned her passion for the cause into action as a lead volunteer for the Foundation, including coordinating her own local Pennsylvania Promise Walk since the inaugural walks in 2005.
"Since she was little, Mya's been helping me stuff goodie bags and hand out ...
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,