May is Preeclampsia Awareness Month, as well as being the month where all of us celebrate the many maternal figures that have positively impacted our lives. As many of you can attest, motherhood is about more than a single day's recognition for the work that you lovingly (or at times begrudgingly!) do year-round for your family.

The same could be said about Preeclampsia Awareness month, which has always been about more than raising a banner or hosting a single event. Preeclampsia Awareness month is about taking action on behalf of a greater family: the global community of women and their families. For the Preeclampsia Foundation, May is not a culmination, but a beginning. It is a call to ACTION.

As such, May's newsletter is a call-to-action to make preeclampsia not just "that pregnancy thing," but a word that reminds people of the 10,000,000 women across the globe that are impacted, sometimes devastatingly, by preeclamptic pregnancies each year.

Read Janel Kovarik's account of sharing her preeclampsia experience with three generations of women, or find out how Promise Walks are delivering local awareness. Discover how healthcare providers are joining our call-to-action to make a difference.

It is also with sadness that we mourn the loss of a great preeclampsia researcher, Dr. Richard Levine, whose contributions to the understanding of the pathophysiology of preeclampsia will continue to live on through his research projects.

We also encourage you to take part in a variety of awareness events this month, including social media events with the March of Dimes, our blog button advertising campaign and a meaningful public art display that could come to your community.

Happy Mother's Day to all!

 

 

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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 Center maintains a 24-hour hotline to facilitate the transfer of high-risk mothers and infants. Through the perinatal center, Rush offers an extensive series of classes for physicians, nurses and other health professionals. Other centers are housed out of the Other centers are housed out of the University of Chicago Perinatal Center; John H. Stroeger, Jr. Hospital of Cook County Perinatal Center; Northwestern/Childrens/Evanston Perinatal Center; University of Illinois /Christ Perinatal Center; Loyola University Perinatal Center; Northwest Illinois Perinatal Center - Rockford Memorial Hospital; North Central Perinatal Center - St. Francis Hospital; South Central Illinois Perinatal Center - St. John’s Hospital; Southern Illinois Perinatal Network - SSM Cardinal Glennon Children's Medical Center and SSM St. Mary’s Health Center.

These regional networks have been widely credited as one of the principle reasons for the rapid decline in neonatal mortality rates in the last several decades. Although, the other principal reason is the introduction in the late 1980s of surfactant replacement therapy, which reduced the incidence of lung disease in newborns.

In Illinois, especially the Chicago area, Preeclampsia Foundation volunteers have been making presentations about the Foundation to various perinatal networks. These volunteers share their stories and information about resources available through the Foundation. They also ask for input on what additional materials would be helpful. From these discussions came the development of a unique HELLP syndrome seminar involving a point-counterpoint type of presentation contrasting the input of Dr. Judith Hibbard of the University of Illinois-Chicago against that of HELLP survivors' real world experiences. As a result of these presentations, orders for the Foundation's patient education materials have increased tremendously. These interactions have also provided good opportunities for raising awareness about upcoming Promise Walks for Preeclampsia™.

Debbie Schy from Advocate Lutheran General Hospital is one of the current co-chairs of the Perinatal Outreach Educators of Illinois and has attended presentations from Foundation volunteers. "We're so appreciative of the volunteers from the Foundation," said Schy. "They are a phenomenal group and we are lucky to have you here."

The Foundation is working with local volunteers to take the success we've enjoyed in Illinois to other major markets across the nation.

 

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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 e-mail. Low and behold, there was a clay shooting location about 20 minutes from my house! The location, Fossil Pointe Sporting Grounds, is on approximately 400 acres of prime North Texas "Hill Country" with amazing views."

The concept is similar to that of a golf tournament, but with a course made up with 12 automatic stations, that each throw a different pattern and number of clays, for a course total of 100 clays. The event will also have warm-up games for anyone that has not shot sporting clays or wants to freshen up on their skills.

After finishing the course, participants will be treated to dinner, an awards ceremony, live auction and a raffle that includes a beautiful Benelli Montefeltro 20-gauge shotgun. Tickets can be purchased now until March 10 or until tickets are sold out. Anyone can buy raffle tickets, sign up individually or with a team to shoot, or come to dinner and bid on the auctions. Raffle winner does not need to be present to win. For more information, please contact Nicole Purnell.

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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 for the Air Force, it'll be a fashion statement with an important message.

Thirteen years ago, Marissa Steiner came into the world quite dramatically, as her mother Stephanie suffered from severe preeclampsia. Today, Marissa has embraced her role as our youngest Promise Walk co-coordinator (Cranford, NJ) as her special Bat Mitzvah project. She is using this Jewish rite of passage to express her gratitude for the lives of herself and her mother, as well as to take steps to combat this disease that threatens her own future childbearing.

In Lehigh Valley, Penn., two volunteers are taking their commitment to preeclampsia awareness very seriously, getting permanent tattoos of the Promise Walk logo while raising thousands of dollars. Talk about a great FUN-raising idea; what a great conversation starter!

Superbowl champs New York Giants have donated signed memorabilia to the only Promise Walk that doesn't have a zip code. That's right, the Brooklyn Bridge has no zip code. Add that to your random-trivia-to-amaze-your-friends, but be impressed that the first ever New York City Promise Walk snagged the rights to cross this famous landmark.

Amanda Basom, first time walk coordinator in Portland, Ore., has capitalized on a popular local amusement park to host the start and finish lines of that city's Promise Walk. Families can turn their cause walk into a day of fun on rides and amusements. (As a former resident of Portland, which was home to my three pregnancies, I'm especially excited to be returning to this special city to walk with friends old and new.)

In Atlanta, Ga., Lori Harrison is having her photo taken with Governor Nathan Deal as she receives a statewide proclamation declaring May Preeclampsia Awareness Month in Georgia. Later at her walk, CNN Medical Correspondent Elizabeth Cohen is a featured speaker, sharing her perspectives as producer of The Empowered Patient AND as a preeclampsia survivor herself.

Butterfly or dove releases at several Promise Walks including San Jose, San Diego, New York City, and Oklahoma City, always bring a tender moment to the festivities - a way to memorialize those mothers and babies lost to preeclampsia.

So many different ways to make strides and deliver hope! I wish I could be at every one of our 30+ walks this year, but if there's one near you, please go, walk, give, learn and tell 'em Eleni sent you! You won't be disappointed.

 

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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 things to watch for and to call in about. But no one ever mentioned that upper right quadrant pain was not normal.

My 2nd pregnancy was pretty uneventful, and even with mild high blood pressure, I made it to a planned induction at 38 weeks. I wasn't planning a 3rd pregnancy but a couple weeks after our 2nd daughter turned 2, we found out SURPRISE, I was pregnant! I was kind of panicked about a pregnancy starting with chronic hypertension, so I went looking for information and stumbled across the Preeclampsia Foundation forums.

Unfortunately, even on BP meds, my BP kept rising. Around 32 weeks, I started getting headaches and at 34 weeks I made my 1st trip to L&D because of it. They monitored me for a while, gave me pain medication & said it looked like things were heading downhill. It was Christmas and I desperately wanted things to be "normal" and be at home with our two other girls who were 4 and 2 so I took Darvocet to deal with the persistent headache and stayed home. In hindsight, this was a totally stupid plan!! I just thought if I could hold out until the 26th everything would be ok.

On Dec. 26, we went to my 36 week appointment and my OB took one look at me and sent me straight over to L&D. Our baby was born just after midnight early on the 27th. Her lungs were mature & she never needed any help breathing. I was discharged with really high BP (even on my BP meds) with the nurses telling me it was just because I was stressed about leaving my baby there. I ended up going back to the ER the next night with a headache worse than anything I'd had while pregnant (which I didn't think was possible!) and really high BP. We spent all night there, I got IV BP meds and morphine shots (which just took the edge off the pain) and went home in the morning with a prescription for an additional BP med. Over 4 years later, I still take a high dose of 2 BP meds. Last year I was diagnosed with Rheumatoid Arthritis so it's possible that was an underlying factor in my having PE 3 times. But our 3 girls are healthy and for that I am truly grateful.

Why do you volunteer for the Preeclampsia Foundation?

I volunteer because the Forums were my lifeline for information, support and sanity during my 3rd PE pregnancy. I know how much they helped me and I see how much we help families every day.

What are your goals and dreams for your involvement with the Foundation?

We live in Oklahoma City and I am very happy that we are getting our own Promise Walk this year! We've done the walk in the Dallas-Ft. Worth area for the past 2 years and plan to do it again in May. My mom and dad donate and come to walk with us because they are so grateful to the PF for what they've done for our family. I can only hope that our fundraising efforts can find a cure.

What has been your most gratifying moment as a Foundation volunteer?

There have been several times as a forum moderator that I have checked for updates first thing in the morning, or stayed up late hoping for an update from one of our posters going through a difficult PE pregnancy. I worry about them like they are family. But it makes me realize how much good we're doing when a member says that she credits us (the forum and the Foundation) for saving her life and/or the life of her baby with the information and support we gave her.

 

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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. The basis for this decision is based on a 140 year-old law called the 1867 Tax Anti-Junction Act, which says that people can't sue over a tax until they actually pay the tax. This decision affects whether the court can consider the other issues below.

Is the individual mandate constitutional? The court must determine whether the federal government has the constitutional authority to require that every individual purchase health insurance or pay a penalty if they refuse to do so.

If the individual mandate is ruled unconstitutional, what happens to the rest of the health reform law? At issue is whether the individual mandate can be severed from the health reform law without dismantling the entire law. Funding from individuals purchasing insurance is meant to cover the costs of other programs in the law and ensure program viability. The Obama Administration is arguing that if the mandate is ruled unconstitutional, the rest of the law should stand with two exceptions: the law's requirement to cover people with pre-existing conditions and the requirement that insurers use a "community rate" that ignores individual health status.

What about the health reform law's Medicaid expansion? Medicaid is a joint federal-state program. Currently, individuals who earn up to 100 percent of the federal poverty level are eligible to participate, and states receive federal funds to support the program. Under the law, individuals who earn up to 133 percent of the federal poverty level will qualify for Medicaid in 2014. If any state does not comply with that expansion in eligibility, those states will forfeit any federal Medicaid funding. The court must determine whether the federal government has gone too far in pushing the states.

Here are some key provisions in the ACA that affect maternal health:

  • Establishes state health exchanges - markets where individuals and small businesses can select the best health insurance coverage to meet their needs;
  • Requires individual and small group plans within and outside the state exchanges to cover essential health benefits, including maternity and newborn care;
  • Provides insurance subsidies for those with incomes between 100-400 percent of the poverty line;
  • Expands Medicaid eligibility to individuals with income up to 133 percent of the poverty line;
  • Eliminates lifetime and annual limits on benefits;
  • Requires insurance companies to guarantee and continue coverage;
  • Creates high risk insurance pools for people who can't get insurance on the market currently;
  • Requires coverage of women's health preventive services without a co-payment;
  • Prohibits excluding patients with pre-existing conditions from insurance plans.

Source: Drinker Biddle & Reath, Capitol Health Record Blog, www.capitolhealthrecord.com

 

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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 better process for the FDA to work with industry. The following is a copy of the Senator’s remarks as recorded in the Congressional Record:

“Preeclampsia is a disorder that affects hundreds of thousands of pregnant women every year, which undiagnosed, can put a woman at risk for death and the fetus at risk of still-birth.

Doctors currently use a mix of imprecise signs and symptoms to diagnose it but often times such signs and symptoms are wrong. However, researchers have found a biomarker—a particular biological process or sign—that can accurately identify women with preeclampsia that are at risk for pregnancy complications.

Unfortunately, tests for novel biomarkers are taking five or more years to get approved by the FDA, delaying patients from receiving the benefits of more accurate diagnoses and treatments.

I was pleased that a recent commitment letter between the FDA and industry specifically mentions the FDA’s commitment to work together with industry to create a transitional IVD, or “T IVD” process for the development of tests for novel biomarkers.

I look forward to seeing how this T IVD process develops in discussions between FDA and industry and am interested in progress towards its implementation, which supports advances in the sciences and promotes access to these emerging diagnostics.

If reducing healthcare costs is a national priority, we need to act today. I encourage my colleagues to pass S. 3187 and allow the FDA to work more closely with the medical industry to safely bring new technologies to the marketplace.”

The Preeclampsia Foundation is engaging with industry and the federal government to ensure biomarkers for preeclampsia can be carefully considered and the barriers to movement can be understood and addressed. The Foundation is pleased to have Congressional attention focused on this issue.

 

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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 conference call, and leveraged their own personal and professional relationships to garner donations to or awareness of the Preeclampsia Foundation.

Jeff has certainly done those things - not always getting a timely thank you from me. When I slow down long enough and pause to thank him, I am reminded of how lucky I am to have him beside me - and how lucky I was back in 2004 when we experienced our preeclampsia nightmare. Man, what he has been through!

Like many 'preeclampsia dads,' within a matter of 24 hours, he went from being a first-time father to potentially becoming a widower and single dad to our 10-week premature baby. Fortunately, baby Brooklyn would be home and I would be out of critical condition within a couple months, so he could finally return to work- but his evenings consisted of visiting me in the hospital where he had to repeatedly convince me how lucky we were (my weakened, stroke-impaired body was fairly skeptical!).

Jeff has been my co-volunteer for the Foundation since 2007 and for the last two years, he has taken on the role of Technology Coordinator for all of the Promise Walks. That role has nothing to do with my own volunteer work for the Foundation (although I do take full advantage of it for our local Walk efforts!). He might say his job is only to "put pins on the Promise Walk map," but I have seen evidence of a much richer involvement. He has provided tech support to Walk Coordinators, interfaced with contracted web developer regarding potential improvements to the website, helped update content on Walk webpages, and as he says, "uploaded more than 100 logos onto the Walk website."

Jeff has utilized his technology background and social media interests superbly in supporting our efforts in Chicago - creating a Chicago Preeclampsia Awareness Facebook page before I was even on Facebook personally, setting up a Linked In page, and tweeting during our Walk/Run. I am always momentarily stunned and touched when my Facebook feed includes a post about preeclampsia that he has made completely on his own - no prodding or suggesting from the wife! It is at these times that I am reminded of one of the main reasons Jeff says he helps out: "it is important to you, so it is important to me."

He connects with the Foundation's mission because our family was touched dramatically by preeclampsia, but also because he wants to support efforts to fight the disease and create awareness, saying, "I have been impressed by the level of passion and commitment that people have toward the Foundation and it is something with which I want to be associated."

As our Foundation and volunteers are now coming through the busiest part of the Walk season - the most successful in the Foundation's history - there are so many people to thank; but please don't forget about the many of whom are those 'silent partners' and supporters who deserve a huge part of the credit. Those are the people who appreciate the passion we all share and remind us how lucky we are when we, ourselves, are not so convinced.

So on this Father's Day, I say, thank you, Jeff; and thank you to all the other "Jeff"s we know are out there!

 

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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 pregnancy;
  • expanding access to primary maternity care by improving Medicaid coverage of freestanding birth centers;
  • expanding access to Medicaid and affordable private health insurance for women of childbearing age who are now uninsured or under-insured;
  • requiring maternal health coverage as an essential health benefit to be provided by individual and small health plans offered within state health care exchanges.*

As the election nears, we will continue to keep you updated on issues related to maternal health that are affected by the health reform law.

*Some information above provided by Childbirth Connection

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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.

  1. 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.
  2. 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.
    1. Presidential candidate sites: http://www.barackobama.com and http://www.mittromney.com.
    2. Congressional candidate sites: www.house.gov and www.senate.gov. To find the Representative in your congressional district, enter your zip code. To find the Senators in your state, look by state. The Representatives and Senators who are running for re-election will also have a separate campaign website, so be certain to look for those sites, as well.
    3. Other candidate sites: To find out who is challenging a current Member of Congress, visit a site like the League of Women Voter's Vote411 site. Vote411 allows you to enter your address in order to identify the candidates who are running in your state or district.
    4. State Representative candidate sites: Look up the website for your state's State Board of Elections for links to local candidates.
  3. Look up a current Member of Congress' voting record. Legislation the Representatives and Senators have introduced, formal statements they have made, and how they have previously voted on issues can be found by visiting www.thomas.gov.
  4. Look up official campaign websites. Whether a standing Member of Congress or a candidate for congressional office, everyone has a website, and those websites include a biographical section, which can provide information on the candidates' previous experience and positions on the issues.
  5. Pay attention to who has endorsed the candidates and where their campaign funding is coming from.
  6. Carefully consider what others - opposing candidates, the news, even your friends and relatives - say about the candidate. Be on the lookout for any bias or "spin" and be wary of any TV ad tactics appealing to emotions. Look for any buried messages about issues beneath the attacks.
  7. Finally, evaluate and match your findings with the issues and qualities you outlined as important to you. In some cases, a clear choice that matches your criteria may be evident early on in your research. Other times, a distinction between candidates or someone who obviously identifies with your views may not be as clear.
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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; San Diego, who exceeded their goal by $4,000; Portland, who exceeded their goal by $4,000, and St. Louis, who exceeded their goal by $3,000.

Aside from the monetary goal, volunteers have done a fantastic job raising awareness through advocacy and media outreach. Walk coordinators secured more than 30 state and local proclamations or state resolutions declaring May as Preeclampsia Awareness Month. Significant media coverage - TV, radio and print, plus Facebook and Twitter - brought preeclampsia awareness and key information to the public and targeted audiences.

This was also the first year that the Foundation utilized a system of Regional Promise Walk Coaches: experienced walk volunteers who helped provide guidance and support for walks across specific geographic regions.

"We're so excited about the success and influence our region's walks have had this year," commented Mid-Atlantic Regional Coach Dawn Detweiler. "With three new walks and two continuing walks in our area, our increased walker participation and sponsorship commitments have made a significant difference locally and in supporting the national drive."

"Successful regional efforts will play an increasingly important role in the growth of The Promise Walk for Preeclampsia," explained executive director Eleni Tsigas.

Kim Timer, coordinator of the inaugural Erie, Pennsylvania, walk stated, "It was amazing to see the support we received from the community and the amount of people who shared their own preeclampsia stories after we announced the Erie walk."

There is still time to donate to your favorite walk! The Promise Walk season ends on August 31, so donate today at www.promisewalk.org.

 

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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 over a week". I didn't make it to that appointment. At 27 weeks, 6 days, I had such bad epigastric pain that I, the one who hates the doctor and hospitals, literally pulled my husband out of the shower and made him take me to the closest hospital, not the one I wanted to deliver at. I was wheeled immediately to labor and delivery. My blood pressure was taken... 222/165. Moments from having a stroke, my room filled with doctors, nurses, neonatologists and staff. I was put on the magnesium to prevent a seizure. They got a transport ready to take me to the city hospital. I was confused and scared. I lasted 5 days at the city hospital with my blood pressure going up and down and up and down. Finally, my son's tracings started to look not so great. So at 28 weeks, 4 days, I got prepped for an emergency c-section. The spinal didn't work and I was placed under general anesthesia. So much for my non-medicated home water birth. My son, Tyler, fought hard and struggled through the next 82 days in the NICU. He came home one day after his due date. Then was readmitted after 11 days for severe reflux for another 4 days. As for myself, I spent another 5 days in the hospital trying to manage my blood pressure. I was discharged, only to be readmitted for another 4 days. I visited the ER a few more times after that and stayed on my medication for almost a whole year after my son's birth. My son is now 16 months old (13 months adjusted) and is just amazing. The light and love of my life. He makes me laugh and smile every day.

2. How aware were you about preeclampsia before/during your pregnancy?

I had never heard of preeclampsia before my pregnancy. I had never heard of preeclampsia at any point during my pregnancy from my doctors and midwives. It was my sister, who saw my swelling, that warned me about it.

3. Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?

I volunteer for the Foundation because I don't ever want a woman, child, or family to suffer because of preeclampsia. I lost my pregnancy, my dream delivery, nearly my life, and nearly my son's life. My husband and I endured the NICU and all that worry, trauma, stress, and sadness that comes with it. All of this because of preeclampsia. The first year I found out about the walk, I offered some simple services to the walk coordinator like donations for the raffle and watermelon to eat. The second year, I took on the role of the Boston walk coordinator.

4. What are your goals and dreams for your involvement with the Foundation?

I don't want anyone to ever have to go through what I, and many others who have had worse experiences, went through because of this disease. I want to find a way to prevent this disease, or find a cause, or find a cure other than delivering the baby.

5. What has been your most gratifying moment as a Foundation volunteer?

The most gratifying moment personally was being the highest fundraising team in the nation. My friends and family have been incredibly supportive. Sometimes you get so swept up in moments and you forget how much illnesses affect people other than yourself. My family was scared and so were my friends. Yet, they visited and held Tyler. They brought food, cooked food, drove me to the hospital to see him when I couldn't drive. They washed bottles so that I could pump and rest without having to worry about it. They texted me when it was time to take my medicine so I wouldn't forget. The cleaned my house and took care of our dogs. My co-workers kept me up to date but didn't bother me. They filled in when they could. I was constantly surrounded by caring people filled with support and love. That shows even more when you realize that because of them, my team was the highest fundraising team in the nation. I just want to say a big THANK YOU to everyone who helped us get there and for all the love and support that people have shown over the past 16 months.

 

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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 baby... "Let's plan to have a drama-free pregnancy."

About a month or two after the birth of my first child I saw an episode on TLC of a woman who lost her baby due to preeclampsia and I thought... "Hey, that is what I had!" I had no idea what it was and so after I watched the show, I researched the condition. The next day, I called my Ob/Gyn and I asked her "Could my baby have died from what I had? " I was concerned because she had been so relaxed about it. She briefly explained the condition to me but again stated I just "needed to relax and watch my diet and I would be fine for the next baby."

A year later, I got pregnant with my second child. At 12 weeks, I looked 28 weeks pregnant due to my size. My signs and symptoms the second time were worse and more pronounced. The doctor prescribed 1000 mgs of Labetalol and 60 mgs of Procardia with my blood pressure still lingering at 210/120. No matter what I did, I couldn't relax because I felt like I had an elephant sitting on my chest and I couldn't breathe. I was heavily retaining water. My nose was enlarged, my lips had swollen, my feet were swollen, I could hardly see out my eyes. I had migraines that were so severe that I couldn't even walk. I woke up every morning and wondered if I would make it to the next day. I felt completely and utterly tortured. I weighed over 185 lbs at 28 weeks pregnant with a starting weight of 120. I would call my Ob's office and cry and tell them I couldn't breathe and I felt like someone was suffocating me and they would tell me to go lay down and rest. I felt that I had no voice for my condition.

At 28 weeks I went into the hospital when my proteins were elevated and shortly thereafter gave birth to my second daughter, Sophia. I was in the hospital for a week after I gave birth and Sophia stayed in the NICU for 8 weeks, as she was born at 3 lbs, but had dropped to 2 lbs 10 oz and we couldn't keep weight on her.

I ended up leaving my gynecology practice 6 weeks postpartum after having been a patient with them since I was 18 years old. I was so upset because I felt that I had had no support during this time. At my 3-4 week post check up I told them that I was blacking out and had fainted the night before. I was certain that I had a TIA, based on the symptoms that were confirmed by several knowledgeable people in the cardiology field. I told my doctors this... And nobody did anything about it. Later, my husband told me that I should ask my Ob/Gyn about the risk of heart disease due to preeclampsia, and I was shocked that I was the one who had to address this information.

Why do you volunteer for the Preeclampsia Foundation? What positions have you held?

I volunteer for the Preeclampsia Foundation because I believe in my heart that this is a serious condition that needs to be addressed. I was shocked when I met other volunteers how many had shockingly similar stories. When I looked at the statistics, I learned over 500,000 babies and 76,000 mothers die each year worldwide. At this moment, I knew this was a non profit that I wanted to dedicate time to helping out. I am very passionate about the organization and what it represents. This past year I was the keynote speaker in Denver at the Preeclampsia Promise Walk and was honored to share my stories with other survivors in Denver. I decided to run for the title of Mrs. Colorado International after winning the state title in March of this year, to see if I could help make a difference state wide, nationally, and if I won the title of Mrs. International, I could change lives across the globe.

What are your goals and dreams for your involvement with the foundation?

My international pageant was held July 20, 2012 in Chicago and I am proud to say that although I did not win the International title, it was such an honor to make it to the Top 10. Once I made the Top 15, we were asked individually to speak to the thousands of spectators about our platform. After I spoke about preeclampsia, I was asked questions about my goals for the Preeclampsia Foundation if I won Mrs. International. I explained how I have been working on signs and symptoms awareness posters that I think would be very beneficial if these were placed in every gynecology office across the nation. That way, on every prenatal visit, when that patient is sitting in her doctor's office exam room waiting for her doctor to come in, she may read this information and know what preeclampsia is. It is my goal that we do not have to rely on the doctor to tell every patient about this disease. They can learn it for themselves and when or if those symptoms arise, they will know what to look for and speak to their physician about it. Education is key: and knowing your body. If something doesn't seem right, then it probably isn't.

What has been your most gratifying moment as a volunteer?

My most gratifying moment this year was when I made it past the Top 15 in the pageant, stood there and spoke about preeclampsia to educate thousands about the disease. You never know who in that audience I might have been affected in a way that could save a person's life. If I had not stepped outside of my comfort zone by entering the pageant circuit, I never would have had this impact. When I made it to the Top 10 after my statement, I knew I had delivered the information effectively and I cried so hard I had a hard time walking off the stage to stand in my spot in front of the crowd. Through my tears I looked over to the judges and blew them a kiss and said "Thank you." I was up there representing myself and my daughters, and I stood for the thousands of women who have lost their babies or lives from this serious illness. I am a better person for having had that opportunity.

My goals now still have not changed even though I did not take home the International crown. I am still Melissa Heideman, a survivor, and I plan to tell my story to anybody who will listen. I have a jewelry designer here in Denver who is gracious enough to have offered me a jewelry show with 100% of the proceeds to the Preeclampsia Foundation. Today I learned that a local radio station wants to do a fundraiser for the foundation and feature me on the show. I also have a local boutique who has offered me the opportunity to have a private party, invite friends, and 10% of proceeds will go to the Foundation. I plan, beauty queen or not, to help the Foundation for as long as I am living. It has been a complete privilege and honor to represent the foundation. Lastly, I plan to help the Preeclampsia Foundation organize the 3rd annual Promise Walk in Denver. Please check out my website at www.melissaheideman.com.

 

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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 for pregnancy information, which ranked 10th on the Foundation's report. The next highest read book at only 10% was Your Pregnancy and Childbirth: Month-to-Month (5th Edition) by the American College of Obstetricians and Gynecologists.

None of the top 10 books in the Foundation's Report scored above an 8 (on a 10 point scale) in all of the judged criteria: depth of coverage, placement of coverage, clarity and accuracy, description of symptoms, and postpartum concerns. Few of the books reviewed provided adequate information on postpartum preeclampsia, with many claiming that the process of birth is in itself the "cure" for preeclampsia.

Survey respondents were also asked to rate their feelings and actions should a pregnancy guide meet all of the Foundation's criteria in regards to preeclampsia. Only 19% of all respondents claimed that they would feel over-anxious or nervous if a book met all of the Preeclampsia Foundation criteria. The remaining 81% expressed that they would feel at least some level of empowerment and a full 39% indicated that they would feel "confident and empowered" if given information about preeclampsia and related conditions.

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What was your experience with preeclampsia?

I had severe preeclampsia (PE) and borderline HELLP syndrome with my first pregnancy at 35 weeks. I had warning signs as early as 30 weeks that I reported to my doctor, but he blew me off as a first time mom who didn't know what pregnancy was like. By the time I was diagnosed, I was in heart failure, cerebral edema, and had platelets low enough to qualify for class II HELLP. I was in really bad shape. I was transferred to another hospital, and the doctor there said we should pray the induction worked because a c-section would kill me. My first daughter was born mildly IUGR. She's almost 9 and doing well today.

I found a new doctor who monitored me closely for my second birth. I started showing the same early warning signs at 32 weeks, and was induced at 37 weeks with mild PE. My second daughter was also mildly IUGR and still suffers ill effects at 5 and a half.

We wanted a third child and ended up with twins. Surprise! It was terrifying. I was already at high risk with my history, and here I was carrying multiples. I was diagnosed with PIH at 22 weeks, mild PE at 31 weeks, hospitalized at 33 weeks, and induced at 36 weeks after being on some form of bedrest for 14 weeks. My third daughter and son were NOT growth restricted. (I credit low dose aspirin for that.) A few hours after birth, I slipped into a coma with severe postpartum PE. The worst of it lasted about 24 hours, then started to turn around. Three years later, I'm completely recovered.

How aware were you about preeclampsia before/during your pregnancy?

I had never heard of PE before I was diagnosed in my first pregnancy. I knew something wasn't right, but I trusted my doctor. With my next pregnancies, I learned everything I could, and did my best to advocate for myself and my children. I became an active lurker and occasional poster on the PF's forum during my twin pregnancy, and it was a huge help to have that support.

Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?

I volunteer for the PF because my daughters and future daughter in law are all at higher risk because I had it. I don't want them to go through what I did, or my grandchildren to be premature and growth restricted.

I trained for a marathon that I used as a fundraiser for the PF. This was my second marathon and ninth endurance race. I ran the Leading Ladies marathon in South Dakota on August 19 of this year. I injured my foot a few weeks before, but had clearance from my doctor to run. I made it 23 miles on a bad foot! I was disappointed not to finish the full 26.2, but I thought back to my births. Sometimes you have to change your plans to ensure the best possible outcome. Thinking of the women I've met through the PF definitely helped me through my training and a brutal race.

I will be joining the planning committee for the Chicago Promise Walk this year. I'm excited to be more involved with that, as well.

What are your goals and dreams for your involvement with the Foundation?

I have a big goal for continuing to run marathons and raise funds and awareness for the PF. (Assuming my foot heals well.) My kids are still young, but in a few years I hope to run a series of races across the country (as of now, it's 11 full marathons and 13 half marathons in one year.) The fundraising is important, but more important is raising awareness all across the country so women have the information they need to get proper care.

I keep a blog about my running and preeclampsia awareness: whatyourunningfor.blogspot.com

What has been your most gratifying moment as a Foundation?

I really enjoy getting to know other mothers and hearing their stories. I hate that we have PE in common, but I hope knowing they're not alone can help them work through what happened as it did for me. I share Survivor Stories on my blog, and several of the women have thanked me for the opportunity to give voice to their experiences.

 

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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 were able to come home after 5 days in the hospital.

2. How aware were you about preeclampsia before/during your pregnancy?

Before getting pregnant, I had heard the word "preeclampsia" but did not know the severity of the disease. At 34 weeks, I was put on bed rest for "pregnancy induced hypertension." The word preeclampsia was briefly mentioned by the doctor, but not explained. I remember reading a small section of information in my pregnancy book on preeclampsia and HELLP Syndrome. I wish I would have known the signs and symptoms sooner as I would have gotten help faster.

3. Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?

After having a traumatic birthing experience, I developed Post-Partum Depression. I felt so alone and felt like no one understood what I was going through. In 2011, I attended my first Promise Walk in Raleigh, NC, and for the first time in two years I felt at peace. Even though I was meeting other women like myself for the first time, I felt like we had a special bond. I left the walk knowing that I wanted to start a Promise Walk in my hometown, Charlotte, NC. I helped co-coordinate the first walk in Charlotte this past May. I have recently been appointed the Mid-Atlantic Regional Coach for the Promise Walks and plan to coordinate the 2013 Charlotte Promise Walk.

4. What are your goals and dreams for your involvement with the Foundation?

I want to spread awareness of this deadly disease to not only women, but their families, friends, and to future health care providers. I was able to get the local high school's HOSA (Health Occupations Students of America) club to volunteer. The club's mission is to promote career opportunities in health care to high school students and to enhance the delivery of quality healthcare to individuals.

5. What has been your most gratifying moment as a Foundation volunteer?

Seeing a community of survivors, family members and friends, and volunteers come together to raise awareness of Preeclampsia and HELLP Syndrome at Charlotte's first Promise Walk for Preeclampsia™. It was no longer about nearly losing my life to HELLP Syndrome, but celebrating the lives of those who had survived and hopefully saving more lives through greater awareness.

 

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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 and then to go on to write We Hope You Like This Song?

I was having a not-so-intellectual conversation with my friends, Ami and Kerry, at a bar shortly after New Year's Day in 2009. We were discussing the ridiculousness of New Year's resolutions and how no one ever sticks to them. This led us to talk about things we could maybe do for a week, but not a whole year. It reminded me a lot of Shelly's way of life. She would do anything on any given day. So on a whim; I decided to try it. I emailed my sister to see if she thought it was stupid...because I was pretty sure it was probably stupid. Courtnee not only liked the idea, she asked if she could join me. We decided to keep track of our "project" via a blog.

As for the book, I always knew I wanted to tell the story of my friendship with Shelly, but it was just too sad. I didn't want to write a sob story about how I lost my best friend. However, once the blog project got going, I found myself opening up about Shelly in ways I never had before. I was basically going through a happy version of therapy. The kind where you don't have to sit face-to-face and talk to a stranger who just keeps repeating "...and how does that make you feel?" The blog project gave me closure.

What experience had the most profound effect on you during your Shelly-inspired year?

Well, there were quite a few "resolutions" that taught me valuable lessons, even if I humiliated myself in the process. Karaoke is a big example of that. I was scared to death to do it, but when I found my inner Shelly and butchered an old Christmas tune in front of a bunch of strangers, it quickly became one of my favorite experiences. I learned that living life out loud (and out of tune) is more rewarding than sitting in the corner humming along. Living the life of an extrovert for a year was rather enlightening. And also terrifying.

You found many creative ways to donate to the Preeclampsia Foundation during your Shelly-inspired year. Which was your favorite and would you recommend others use it?

We made a rule that for every failed resolution, we had to donate $15 to the Preeclampsia Foundation. So even when we failed, we sorta felt like we won. It was easy to donate right from the website, preeclampsia.org. We also invented "Audience Suggestion" weeks. People could suggest a resolution for us to complete at $5 a pop and we'd pick our favorite. It was always fun to see what people wanted us to do. Not sure what we would've learned from walking around with our fly undone all day, but thanks to a suggestion, we considered it.

Now I do the Promise Walk every year in Davenport, Iowa. The walks are held throughout the country, and I definitely suggest people check out the event nearest them. It's a great way to spread awareness and have a little fun. There are also a lot of other local events like Zumba and scrapbooking. My personal favorite is the Trivia Night Shelly's family organizes every year. Mostly because it's in my hometown of Walcott and I like to eat cream-cheese-and-corned-beef-wrapped-pickles with Court, our husbands, and Shelly's sister, Kim.

What did you know about the dangers of preeclampsia prior to Shelly's diagnosis?

I had never even heard the word "preeclampsia" before Shelly told me she'd been diagnosed. It sounded scary to me right off the bat, but Shelly assured me that everything would be okay once they induced labor. Because that's what the doctors told her. When I explained Shelly's situation to my co-workers, they all had a story about preeclampsia. Everyone seemed to know someone who had experienced it, but no one could really tell me what it was. It wasn't until after Shelly's death that I did some research to learn more about the dangers of preeclampsia. This is why I feel it's important to spread awareness about the signs to look for and what we can do to help save the women and babies we love so much.

What is one thing you wish you had told Shelly?

I wish I'd given a speech at Shelly's wedding. I had it written in my head, but it never found its way out. I wanted her to know that she is responsible for making me who I am today. My family also played a crucial role, of course, but they didn't have a choice. They were stuck with me. Shelly and I led very different lives, especially after college. She married a fellow teacher, Brad, and I moved all over the place, dating all kinds of dudes. She called me a 'big city girl' and said she was proud of me during one of our last phone conversations. I believe a lot of my strength to take such risks in life came from the confidence her acceptance gave me. It's funny how much power being best friends with the popular girl in class can give you. She picked me for a reason. And even though I feel crazy insecure sometimes, I know that I possess something that made her choose me all those years ago. And that makes me feel like I can do pretty much anything.

We should all have a few more "I love you, man" conversations in our lives... even if it takes a few martinis to get there.

 

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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 care and patient education essential.

Unfortunately for patients, preeclampsia education is not a required component of prenatal care visits, though the Preeclampsia Foundation is working hard to change this. Perinatal practice guidelines currently published by the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) provide no guidance to providers regarding patient education to help women recognize early signs and symptoms of preeclampsia, which could guide them to early diagnosis and improved clinical management.

Little is known about how many prenatal care providers discuss preeclampsia with their patients or if women understand what is communicated to them when such discussions occur. In response to this fundamental gap in knowledge, the Preeclampsia Foundation conducted an internet-based survey in March and April of 2008 to determine what women learned about preeclampsia in the context of prenatal care during their first pregnancy (2000-2008). The study is currently being submitted for publication, but the results were surprising and could help health care providers make informed decisions about patient education.

Only 40% of the women indicated that their prenatal care provider "definitely" described preeclampsia; 35% said they were "definitely not" given information about preeclampsia, and the remaining 16% did not remember. Of those who definitely had preeclampsia described to them, slightly more than half said they "fully understood the explanation," 37% "understood most of the explanation," while 15% either "understood some of the explanation," or did not remember.

Here is the really interesting bit: a full 75% of women who said they "definitely" received information on the signs and symptoms of preeclampsia and understood "fully" or "most" of the explanation, indicated that because of this information, they took one or more of the following actions:

Reported symptoms to their provider,
Went to the hospital,
Monitored their own blood pressure,
Complied with an order of bedrest,
Responded in some other way (e.g., made dietary changes, did their own research on preeclampsia).

However, of those who did not understand the explanations provided, only 6% took any action based on the presence of symptoms.

Survey participants tended to be well-educated and middle class, making the importance of what we learned from this online survey clear: even among well-educated, middle-to-high income women, a substantial proportion were not told about preeclampsia or did not fully understand their providers' explanations about the signs and symptoms of preeclampsia. Our findings likewise suggest that when women know how to recognize the signs and symptoms of preeclampsia and they understand the explanation offered, they are likely to act on that information and contact their provider or go to an emergency department.

It follows logically that women with fewer resources and less education, who may also be at higher risk for preeclampsia, may receive and retain even less information; and due to disparities in health care access, they may not have adequate resources to report symptoms to a provider.

Education about preeclampsia and related hypertensive disorders must continue into the post-partum period so that women can recognize prodromal symptoms of post-partum and late post-partum eclampsia. Most cases of eclampsia that develop after the first 48 postpartum hours are first seen in an emergency department. A woman with legitimate complaints who presents at an emergency department may leave untreated if the staff are emergency or trauma providers, not OB/GYN specialists. Thus, women not only need basic education in preeclampsia, but they require repeated education to ensure they understand the risks and can be empowered with knowledge that will allow them to advocate strongly for their own care.

We offer several recommendations based on our observations:

More research is needed to fully assess the health literacy, knowledge, attitudes, and behavior of pregnant women and to examine the practices of prenatal care providers;
ACOG/AAP guidelines for prenatal care should include more deliberate and detailed explanations of the hypertensive conditions of pregnancy;
At all prenatal visits, providers should clearly explain warning signs and symptoms with directions about what their patients should do if they experience or recognize any of the signs or symptoms.
All women should be hearing a strong public health message that they can and should be advocates for their own care.

Guest columnist Dr. Anne B Wallis, University of Iowa, also wrote on this topic in her blog, [bloga epidimiologica]. It's worth reading the longer version, especially if you like the science-y stuff.

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Posted on in Preeclampsia Information

Remember the moment when you embraced maternity clothing? After a few months wearing "roomy" jeans and shirts, you made the leap into a wardrobe consisting of blouses with an empire waist.

There are very few times in our life you wear a patient status so conspicuously. Walking around in maternity clothing informs everyone of your current status. Unlike most other conditions, random strangers remark upon your wellbeing. When things are going well, these remarks can be appreciated as well intentioned. When things are not going well, these random comments can be heartrending.

It is hard to wear our medical status in public. It is hard to bear our soul. But pregnancy is finite; we only have a few months of "showing." Sometimes we have been blessed and become the parent of a new baby and sometimes a life ends before it begins.

The body returns, but a story remains. And I ask you, "Are you showing?"

There is a patient art movement spreading around the world. It is called The Walking Gallery of Healthcare. Virtually every day at medical conferences and meetings, individuals are attending presentations or giving lectures while wearing business suits. That is not unusual; but these suits have paintings on them. On the back of every garment is the story of a patient. Some of these stories are joyous: a mother survives cancer and is able to raise her infant son, or a woman has a second pregnancy without complication. In some stories a child is lost due to a heart condition or to preeclampsia.

There are 17 artists currently painting in the gallery and 200 people walking around with paintings on their backs. For more information please contact me on Twitter. We would love to have you join us and show the power of the patient story.

Guest blogger Regina Holliday's husband died of kidney cancer in 2009 after weeks of hospitalization in multiple locations. Regina and her husband had problems with care coordination, having access to his own medical records, and lack of compassion from the medical professionals. After her husband's death, Regina started painting murals to depict individuals' experiences with health care, and hasn't stopped.

 

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One of the wonderful aspects of living in the United States is that you can directly influence the government process at the local, state, and federal levels. This influence only requires passion and persistence. While the Preeclampsia Foundation is thrilled that our collective passion and persistence led to May 2013 becoming the first federally-recognized National Preeclampsia Awareness Month, our work is far from over. We still need your help to secure more state and local preeclampsia awareness proclamations.

You may be asking why a local or state proclamation has value if the federal government already designated the month of May for preeclampsia.

 

All policy work ultimately begins back home: educating elected officials about preeclampsia -- what it is, why research is needed to identify and prevent it, why new screening and diagnostic tests are essential to identifying and responding to it, and why access to prenatal care is essential to saving the lives of moms and babies. Your efforts to educate state and local officials will establish an educated crop of policymakers for years to come, whether many move on to greater levels in government, or they remain influential in state and local government and can also weigh-in with Congressional lawmakers.

 

You may have heard the expression "All politics is local." That's because a politician's success is directly tied to his or her ability to understand and influence the issues of his or her constituents. You are the "constituent." No one is more passionate about preeclampsia than a woman who has faced the disease or a family affected by it. Elected officials at all levels of government are bombarded with advocacy requests on every topic. But, public officials are elected by you and work for you; they listen to their constituents first and foremost.

 

Being an effective advocate for preeclampsia only requires that you share your story. Did you experience this dangerous disease? Did your pregnancy reach severe or critical status? Were you unaware that you had preeclampsia and went undiagnosed, hence putting yourself and your pregnancy at risk? Your advocacy can directly result in support for preeclampsia research funding, health education and literacy campaigns that help reach women and families, coverage for maternal health care services, and so much more.

 

Seeking a proclamation for your state or city is the first step to building a relationship with your elected officials.

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