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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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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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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Posted on in Health Information

<p>Awareness that good outcomes don't always happen helps us prepare while hoping for the best.<a href="/component/lyftenbloggie/2013/03/04/173-awareness-that-good-outcomes-dont-always-happen-helps-us-prepare-while-hoping-for-the-best" target="_blank"></a></p>
<p>Just because a pregnancy is classed as high-risk doesn't mean that it will become medically complicated - and just because a pregnancy is classed as low-risk doesn't mean that it won't. Many of us know this firsthand; we were low-risk right up until the complications developed in our first preeclamptic pregnancy, or went into a subsequent pregnancy classified as high-risk, only to breathe a sign of relief as we delivered a full-term healthy baby.</p>
<p>We've all seen the list of risk factors for preeclampsia: first pregnancy, personal or family history of preeclampsia, underlying conditions like chronic hypertension or lupus or autoimmune conditions, obesity, history of infertility or prior miscarriage. Awareness of your own risk factors is key to managing them prior to and during pregnancy and might lower your risk. For example, chronic hypertensives have a one in four chance of developing preeclampsia, and if they do develop it, their risk of stroke is probably lessened if they began pregnancy with well-controlled pressures.</p>
<p>Knowing how to access care providers who specialize in medically complicated pregnancies is another sort of awareness. Do you know where the closest NICU is? Do you know how to find a maternal-fetal medicine specialist who conducts research into HELLP syndrome? Do you want to plan to move closer to a particular hospital during your third trimester because of your history and the distance?</p>

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Be aware of your long-term health risk factors and communicate them.

We've all seen the risk factors for cardiac disease: high blood pressure, high cholesterol, inactivity, obesity, smoking, and history of preeclampsia. Awareness of your own risk factors is key to managing them as you age and might lower risk of cardiac disease.

A recent analysis of the accuracy of our recall of our pregnancy histories by a team of researchers at the Harvard School of Public Health showed that we may not remember our complicated pregnancies well enough for questions about them to be a useful part of a screening tool. For our recall to be useful as a clinical tool in screening for heart disease, we need to be mostly accurate in our recollections years after delivery. (Imagine a 55 year old in her internist's office this week, asked for details of her pregnancy 30 years ago...) But the analysis also showed that as severity of our pregnancy complications increased, accuracy of recall also increased.

Regardless of whether or not a question about our pregnancy history makes it into a formal screening tool, our awareness of our histories and the risks they pose, communicated to our care providers, is another key to good healthcare. Those of us who do remember, or who have our records, can communicate this risk factor to our care providers and ask for appropriate support.

Knowing how to access lifestyle management tools is another sort of awareness. Do you have a plan for gym time? Do you need statins? Have you had your health evaluated by an internist or cardiologist who knows of your pregnancy history and who understands that your history increases your risks?

 

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Are you a Pinterest addict? Enjoy expressing your life experiences visually? Then join our 2013 "Virtual Memorial & Survivor Quilt" board. The Virtual Quilt board is a compilation of images from any individual who wants to contribute in honor or in memory of loved ones impacted by preeclampsia, HELLP syndrome, or other hypertensive disorders of pregnancy. Share your feelings and experience with preeclampsia through pin art!

Having your pin as a part of the quilt only requires three easy steps:

(1) Create or choose an image with a personal significance to you and your pregnancy experience. It might be a personal creation, a photograph, or a quote.

(2) Pin the image to one of your own boards and tag the Foundation in the comments by typing @Preeclampsia or if you don't have a Pinterest account, send an email with your image to Director of Community Relations Laney Poye.

(3) We will re-pin your tagged pin onto the Quilt board within 48 hours of being tagged, as you join other survivors and their families to create a work of beauty and unity.

At the end of May, Preeclampsia Awareness Month, we will be doing something very special with the Virtual Quilt board, so the more pins, the better! For more information, contact Laney Poye.

 

Tagged in: Awareness
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By Quincy Fleming ~ Physical activity is something that my husband and I have always enjoyed, so it is only natural that my children have also gravitated towards endurance sports. It takes a lot of time and creative scheduling to get workouts in, but instead of trying to keep the workouts and family time separate, we find all kinds of crazy ways to include our two children. In fact, my husband and I are currently training for an Iron Distance Triathlon. Why, you might ask?

My children and I are preeclampsia survivors. And while we are lucky to have escaped with our lives, our health, our sanity, I know that we are at a heightened risk for heart disease, diabetes, obesity. It seems every lifestyle disease out there carries an extra punch for us. So we asked ourselves: why not embrace healthy lifestyles and exercise as part of our everyday family time?

Unfortunately, because the life that includes raising small children is demanding and time consuming, physical activity often becomes viewed as an adult selfishness to be discarded in favor of doing "more important" things for our children. But taking care of yourself IS doing something for the children. And more importantly, is setting an example for your children.

So from our active family to yours, here are some strategies to get the whole family moving:

1. Go somewhere fun for the kids and have Mommy and Daddy take turns getting in a workout. Summers at the beach is a great opportunity: one of us will start out with the kids building sandcastles and playing in the waves, while the other one goes for a swim, bike, or run, then switch. And be sure to remember to spend some time together, too!

2. Plan a day trip or vacation around physical activity. I am not suggesting you take the kids biking in the Alps here. (Actually, I am... that would be awesome! Can I come along?) But you could definitely tour a place by walking or biking, or, incorporating physical activities into your trip. I am all for relaxing. And eating. But I try to keep it in smaller proportion to moving.

3. Move together.
Take the stairs, park far away, walk somewhere you would normally drive. Put on some music and dance. Go to the school playground and shoot some hoops. Or kick it with a soccer ball. Toss a football around. Play tag. Roll down a hill. Take a flashlight out and do a nighttime walk. Have underwater tea parties at the pool. It doesn't have to be earth shattering or a monster workout. Just do something that makes you move more than you normally would: because it beats sitting on the couch!

4. Compete. Play games with your kids and don't always let them win. Encourage them to try to be the best at something. Kids are awesomely egotistical and competitive. They are actually kind of fun and funny this way. Enjoy it, feed off of it a bit, because trust me, they will LOVE it!

5. Sign up. Most kids can run/walk a 5k...so can most adults. If they are too little to run/walk, they can ride in a stroller... so why not sign the family up for a family race? Many events have themes, support and post-race activities and are geared towards families (including your local Promise Walk for Preeclampsia!). Even if your 7 year old complained the whole time, he will proudly proclaim he has run a 5k once the race is over. And for the rest of their lives, they will know they can do it and will be much more likely to do it again.

I'm not encouraging everyone to run out and sign up for some crazy endurance event (leave that to me). But I am encouraging you all to get out with your families and MOVE a little bit. Walk, run, swim, bowl, dance, jump, climb, whatever gets you active. And whatever it is, do it together!

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new-headerAs 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 (read Eva's story here).

 

Coder said, "When I am working on drilling the holes or putting these together, it is a constant reminder of the huge toll preeclampsia takes on a family." All of the materials are donated by their family and the proceeds of each Eva's Angel sold goes to the Preeclampsia Foundation. This year, Eva's Angels were available for purchase at the Rochester, Minn. Promise Walk, where Coder's daughter Eliza, Eva's mother lives. For more information on ordering an Eva's Angel, please contact Sandy Coder.

 

new-headerGrandmother Cynthia Streets also found a way to make a difference and remember her granddaughter, Madi Rae: a memorial bowl-a-thon in Rome, New York on June 17 to benefit the Foundation. Madi Rae was born 16 weeks early on June 30, 2011 and passed away on July 2, 2011 (read Madi's story here).

 

 

"I wanted to do something, anything, hoping to make a difference to help someone else," said Streets. Their family plans on making the Bowl-a-Thon an annual tradition to celebrate the short life and long legacy of Madi Rae. "I am very proud of it, and next year we will do so much better!"

 

The impact of preeclampsia on grandparents, no matter the outcome, is often overlooked. They stand by our bedsides when we are sick, hold our hands when the news isn't good and usually are the best cheerleaders and supporters that we have. They feel the pain of their own children's sadness, plus their own grief of losing a grandchild. Thank you to all the grandparents out there that continue to make a difference!

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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 raffle baskets for various fundraisers to support the Foundation," said Dawn. "When Mya found out about the t-shirt design contest, she was eager to participate, and this contest was a new way for her to get involved."

Mya's design incorporates the many different types of people who help the Foundation "Make Strides and Deliver Hope," and will be featured on all of the 2012 Promise Walk shirts.

"I wanted to show all the different people that go to the Promise Walk to help, like dads and family members and friends," Mya explained. "My mom also helped me add a butterfly for people who walk because they remember moms and babies that they miss." She was surprised and excited to learn that she had won the design contest out of more than a dozen design contenders.

"The design reflects not just the wonderful community that the Promise Walk brings together each year - people who walk, give and learn," said executive director Eleni Tsigas, "but it also represents the promise we make to mothers around the world that they will have the chance to watch their own children grow and develop creativity and compassion for others."

"I just thought it would be a neat chance for us to be creative together, but it's turned out to be a very special experience," Dawn added. "A valuable lesson in how being dedicated to a cause and making a seemingly small contribution can really matter... and be fun at the same time!"

Be sure to register today at www.promisewalk.org for a walk near you to get your own 2012 Promise Walk t-shirt! And start thinking about your ideas for next year's design contest.

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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 unsolicited explanation. I was too shell-shocked to ask any intelligent questions when she took my blood pressure a few days after I returned my second urine sample and simply told me I had "earned a vacation in the hospital." In my recollection - and that of my entire family, who shared in all the details of my pregnancy and have since been grilled on this subject - there was no mention of the word preeclampsia or HELLP syndrome until much later.

Those were the opportunities I missed. It wasn't until weeks later when I had come out of a coma and begun recovering from multiple organ failure that I saw a glimmer of my ability to advocate for myself. Growing tired of the feeding tube that was giving me sustenance (and a very obvious indication and reminder of my less-than-hopeful situation), I became committed to getting it out. I lobbied my doctors for a follow-up swallow test in the hopes that this would be the one that I would pass. I did, the feeding tube was removed, and it wasn't much longer until I was home, caring for my baby daughter, and back to a "normal life." Ultimately it was an important milestone representing the first step I could take toward setting my own recovery process.

CNN medical reporter and author Elizabeth Cohen advocates for making sure we get our business "DUN" when at the doctor's office: find out our diagnosis, understand the plan to make us better, and learn the next steps toward feeling better. She recommends the following simple questions to get the ball rolling and to gain clarity on our personal health status:

  • What's my diagnosis?
  • Which drugs should I take, if any?
  • Are there any other treatments or instructions?
  • Do I need a specialist? If so, do you have a specific recommendation?
  • How long should I wait for this treatment to work?
  • If my problem doesn't get better in that time, what should I do?
  • Am I awaiting any test results? If so, when are they due back in your office?


And, during pregnancy, the following questions may be important to ask:

  • What was my blood pressure?
  • How much protein was in my urine today?
  • Does my weight gain over the last few weeks seem okay?
  • What other symptoms should I be looking out for?

I asked none of these questions and didn't appreciate enough how the age of managed care, rushed doctor's visits, and healthcare reform might be affecting my pregnancy. It wasn't until much later when I needed hope that I began advocating for myself. Now more than ever, though, we all need to prepare to work with our doctors to get the best care we can - and to have hope that there can be a positive outcome.

 
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Our seventh annual Saving Grace dinner gala fundraiser took place in Manhattan on the evening of Saturday, November 12. It was simply a wonderful evening, replete with raw emotion, inspirational stories, hope and gratitude. Together with The Foundation for America's Blood Centers, another worthy charity dedicated to saving the lives of mothers and babies, we reached a broad and extremely engaged audience of almost 500 guests. With the support of so many individuals and our event sponsors - Johnson & Johnson, Ortho Clinical Diagnostics, Merck, Abbott and many others - we grossed nearly $550,000 to support the vital missions of our organizations!

Our theme this year was expanded from our traditional 'A Night of Hope' to 'A Night of Hope and Gratitude,' to reflect the hope we derive from, and the gratitude we express toward, our esteemed medical researchers and practitioners and our life-saving blood donors. We were honored to hear a keynote address from Dr. James N. Martin, Jr., President of the American College of Obstetrics & Gynecologists (ACOG). In his remarks, Martin emphasized the need to generate more research about preeclampsia, as well as to translate existing research into actual clinical practice, both priorities for his ACOG presidency. This drive for increased research and improving patient care was also reflected in the honoring of four New York area physicians, who have shown exemplary dedication to maternal-fetal healthcare, including Drs. Phyllis August, Mary E. D'Alton, Andrei Rebarber, and Daniel Skupski.

I also want to emphasize the point that our volunteer community (all of you!) instills hope for the future through your varied projects, initiatives and stalwart dedication to our mission and values. For this, I want to express my deep and most sincere gratitude. Thank you! And special thanks and congratulations to the recipient of the 2011 Preeclampsia Foundation Hope Award for Volunteer of the Year Becky Sloan, for her exceptional work as National Walk Director of the Promise Walk for Preeclampsia!

Our Mistress of Ceremonies was a familiar face in tri-state broadcast news. Diana Williams, an award-winning reporter and anchor for WABC-TV Eyewitness News, brought a great energy and even some relevant "breaking news" of her own. Attendees enjoyed musical performances by the award-winning New Jersey Youth Chorus and Jim Papoulis, a well-known musical composer and conductor. Their performance was highlighted by the evening's theme song, composed by Mr. Papoulis and fittingly titled "Saving Grace."

 

The collective hard work of these individuals and volunteers like all of you has helped to make the Preeclampsia Foundation what it is today: (1) a vital information and educational resource for those women affected by hypertensive disorders of pregnancy, and their caregivers, and (2) a sponsor and funding source for innovative research into the cause and cure of the disease.

The very best to you and your families this holiday season!

 

 

 

 

 

Pat Dignan

Chairman, Board of Directors

 

 

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This article appeared in the May 2013 edition of PRE-EMPT NEWS.

On May 27, 2013, PRE-EMPT in collaboration with MCHIP, organized “Preeclampsia 2013: Global Symposium” as a satellite event to the Women Deliver conference in Kuala Lumpur, Malaysia.

We would like to thank the Sabrina’s Foundation for their generous support in making this symposium possible. The symposium was designed for ministers of health, health managers and administrators, doctors, pharmacists, midwives, nurses, politicians and patient advocates committed to decreasing the global burden of maternal and perinatal mortality and morbidity related to pre-ecalampsia and eclampsia. Interactive panel and group activities included discussion of the WHO preeclampsia and eclampsia recommendations, implementation strategies, global commodity issues, quality indicators and current research initiatives.

In addition to these discussions, Marshall Ignibosa Ukpoma from Nigeria addressed the symposium to provide a family perspective on losing his wife and child to preeclampsia. His book “283 days after I do” is available on Kindle and an element of his advocacy and outreach efforts to raise awareness about preeclampsia.

The first panel focused on global approach, comprising of Peter von Dadelszen, Matthews Mathai, Jeffrey Smith and Hillary Bracken, included highlights on PRE-EMPT research, WHO Knowledge Translation, program implementations initiatives and preeclampsia and eclampsia quality indicators. Another qualitative focus was provided by Asif Raza Khowaja and Marianne Vidler on the decisionmaking dynamics and determinants of care seeking for preeclampsia community perspective in Pakistan and community perspectives of preeclampsia and eclampsia in low and middle income countries, respectively.

The second panel was focused on commodity supplies for preeclampsia: global challenges and solutions. Hans Vemer presented on the global initiatives for commodities for preeclampsia while Lily Dwerani presented on the issues related to MgSO4. In the latter half of the panel, Hans Vemer and Deborah Armbruster led a discussion on addressing some critical questions around the formulation and standardization of MgSO4.

In addition to two panel discussions, the symposium also had three problem solving stations focused on: 1) mild and severe preeclampsia: monitoring and expectant care led by MrutunjayaBellad and Peter von Dadelszen; 2) advocacy and leadership for a global approach, led by Tabassum Firoz; and 4) MgSO4 and antihypertensives: commodity management and appropriate use, led by Hans Vemer and Jeffrey Smith. The symposium had participants from over fifteen different organizations and 13 different countries. We thank all our partners and collaborators who helped bring preeclampsia into the discussion at this conference through this symposium.

PRE-EMPT at Women Deliver 2013: A recap

The Women Deliver conference was held in Kuala Lumpur, Malaysia between May 28-30, 2013. The conference included over 4500 participants from 139 countries and over 2200 organizations. Also, Jeffrey Smith, Deborah Armbruster, and Peter von Dadelszen and Sadaf Khan (PATH) led a session on the latest evidence on maternal health and where it is leading us. The session received an overwhelming response from the Women Deliver community. Many PRE-EMPT partners among several of our collaborators actively participated in presenting various sessions at the Women Deliver conference including Ana Langer, Zulfiqar Bhutta, Metin Gulmezoglu, Beverly Winikoff, France Donnay and Matthews Mathai.

 
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Marshall Ukpoma delivers emotional plea for healthcare improvementsGUEST BLOG BY MARSHALL UKPOMA

From the shores of the Atlantic Ocean, Lagos-Nigeria, over the lovely Indian Ocean to the beautiful city of Kuala Lumpur (KL), Malaysia, it certainly was worth flying over 15 hours to arrive at the Kuala Lumpur convention center for the Women Deliver 3rd Global Conference.

According to President of Women Deliver Jill W. Sheffield, guests from about 145 countries were hosted in this year’s conference with the hope that one day, through the collaboration of every stakeholder, women across all geographic, socioeconomic, and cultural lines will have access to the care they need, and no woman will die giving life.

This year’s event featured various sessions of talks, focusing on women and girls, delivered by experts and policy makers across genders, sectors and generations, and from around the globe.

Pre-conference events took off at various centers in KL, Malaysia, and it would have been an incomplete event if issues concerning preeclampsia and eclampsia were not discussed! Thanks to support from Sabrina’s foundation USA, USAID, MCHIP, the PRE-eclampsia Eclampsia Monitoring Prevention and Treatment Team, University of British Columbia (PRE-EMPT - UBC) successfully organized a symposium on preeclampsia and eclampsia, tagged Pre-eclampsia 2013: A Global Symposium.

As a committed patient advocate on preeclampsia and eclampsia issues, I was at the symposium, sharing my story from the book 283 Nights after I Do to further strengthen the global call for better patient/community and health care worker awareness in the fight to extinct every preventable maternal and/or perinatal death and morbidity caused by pre-eclampsia/eclampsia.

It was sad to know that some health care providers still stuck to the use of diazepam for management of preeclamptic seizure! Do you know one of such providers? Here’s an advice from Dr. Peter von Dadelszen (PRE-EMPT principal investigator) to fellow health care providers: “If your colleague wants you to administer valium, then go ahead, but give the valium to your colleague and give your patient magnesium sulfate (MgSO4).”

Fears related to the use of MgSO4 as preferred drug for preventing and managing eclamptic seizures were debunked by Dr. Jeffrey M. Smith (MCHIP) as he showed reviews which indicated a low incidence of severe side effect (generally 1-2%) directly attributed to use of MgSO4. Indeed MgSO4 is a life-saving, safe intervention.


Moving forward, is there yet a challenge with the use of magnesium sulphate? Perhaps!


Magnesium sulphate comes from manufacturers in different packaging and formulations and this poses a challenge for some health providers who have difficulty diluting the drug and calculating the required dose. These packaging and formulation variants have been identified as culprits in some cases of magnesium sulphate under doses or over doses.


As awareness about preeclampsia and eclampsia rises, we also lend our voices to the global policy makers in drug formulation to provide magnesium sulphate in just one or a maximum of two formulations that facilitate usage and foster acceptability.


A call for joint action: Let’s give life back to those who have been giving life since the human race started!

* USAID – United States Agency for International Development

* MCHIP – Mother and Child Health Integrated Program

[Editor's Note: Marshall Ukpoma's wife died from preeclampsia in 2009 and, since then, he has been a tireless advocate in Nigeria on behalf of our mission to drive awareness and education. This week, he was representing the Preeclampsia Foundation in Kuala Lumpur, Malaysia at the Women Deliver conference, speaking at the Preeclampsia Symposium.]

 
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The first official National Preeclampsia Awareness Month (May 2013) was supported by many Web content partners. Feature articles and blogs appeared in many places. Among them were the following. We are grateful to all who shared information about preeclampsia on our shared mission to raise awareness, educate patients and health care providers, improve the quality of care, accelerate research for a cause and a cure, and support all affected by the hypertensive disorders of pregnancy. Common themes among the feature articles and blogs were Preeclampsia Awareness Saves Lives, Empowering Patients & Health Care Providers, Preeclampsia & Heart Health, Call to Accelerate Research, and Global Access to Care.

In addition to feature articles and blogs, Preeclampsia Awareness Month 2013 was marked by many local news articles and blogs in Promise Walk locations, many nationwide Mommy Blogger mentions, and also Social Media posts nationwide, including five Twitter events. The tweets from these events can be viewed on Twitter.com under the hash tag #PreAM13.

We are especially thankful to these individuals and organizations for helping us with our Preeclampsia Awareness Month Twitter Chats:

  • The PreAM13 Kickoff Twitter Party, featuring Philadelphia Promise Walk Coordinator Sarah Hughes
  • The Empowered Patient, featuring CNN Senior Medical Correspondent Elizabeth Cohen
  • Heart Health 4 Preeclampsia Survivors, featuring SCAI (www.secondscount.org) and cardiologist J.P. Reilly
  • Research for Preeclampsia Patients, featuring Dr. Douglas Woelkers and Caryn Rogers, Preeclampsia Foundation Science Writer
  • Preeclampsia and Global Maternal Mortality, featuring Eleni Tsigas and Jeanne Faulkner of Every Mother Counts

And we thank Pregnancy Magazine for hosting our first Google + Hangout, "What is Preeclampsia?," featuring Eleni Tsigas, Dr. Douglas Woelkers, Dr. Linda Burke-Galloway and Nicole O'Connell, preeclampsia survivor.

 
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Nadine Brunk, a Certified Nurse-Midwife, started a program called Midwives for Haiti (MFH). We’ve been talking to Nadine about how we can extend our work in patient and community education to prenatal care settings like those found in Haiti. I feel like we have much to learn from Nadine, as one minute with her blog will show you. Recently, she shared this amazing story with us.

It was February 5th. The pink Jeep took four midwives to do the monthly prenatal clinic at Saltadere [a town in rural Haiti]. On the way, they stopped at the Birth Center at Thomassique to drop off two nurse-midwives who were going to conduct continuing education with the birth center staff on the difference between chronic hypertension and preeclampsia and the treatment protocols for both.

Thomassique is an hour's ride from Hinche and the road is very rough. Saltadere is another hour east of Thomassique and there is no birth center there. When the midwives arrived, they set up their stations and proceeded to see 26 pregnant women and one who had a negative pregnancy test. One woman was treated with Aldomet for chronic hypertension at 20 weeks gestation. Her blood pressure came down to normal one hour after taking her medication so she went home with a month's supply.

But there were five women who were very sick. They had very high blood pressures related to preeclampsia - the major killer of pregnant women in Haiti. (In 3 of the charts I saw records of 194/120, 208/128 and 154/100.) Two of them were in labor and vomiting. Three were term pregnancies and two were preterm.

So when the Jeep stopped in Thomassique at the end of the day to pick up our midwives, Diane and Marion, they told the driver to "Prese, prese" (hurry, hurry) because they had five high-risk pregnant women to take to the hospital. Two were in labor.

It was a harrowing ride. One of the risks of moving women with high blood pressures is that they will have seizures. Quiet, still, and lying on the left side would be the safest way to transport them. But there was no room in the Jeep for them to lie down and that Jeep ride over that bumpy road is anything but quiet and still.

Diane and Marion found bags for the 2 vomiting women and tried to make others comfortable sitting on the floor with their heads in the midwives' laps. By the time the ride was over everyone on the Jeep was nauseated. The midwives had started IV's on all the pregnant women so that they would be well-hydrated for whatever needed to be done at the hospital. It was the best they could do. They feared the two in labor would deliver on the way and that the others would have seizures from the bumpy ride.

All eventually safely arrived at the hospital and were turned over to the midwives (all MFH graduates) at the maternity unit. Before the night was over 4 had delivered and were still on MgSO4 for severe preeclampsia and two preemie babies were transported to Cange. The next morning the 5th was being induced for being 2 weeks postdate and delivered later that day, still on MgSO4.

The good news is that, although we do not know the outcomes for the babies who went to Cange, we know that the other three babies and all the mothers did well and were eventually discharged. The following morning, two of the women, who were still in the same clothing from the day before, had no family to take them home to Saltadere and no clothing for their babies so Marion paid for their moto-taxi rides home and gave them cloth diapers, onesies, and receiving blankets from the MFH supply closet.

I know this is only one day and one story from Saltadere where the mobile prenatal clinic's monthly trip to Saltadere saved the lives of mothers and babies.

Nadine wants our help: “A graphic-based educational tool to use in rural Haiti about signs and symptoms of preeclampsia would be great. We teach matrones who cannot read and write, and deliver skilled prenatal care to about 500 women per month in the Central Plateau. Haitians respond well to visual learning.”


One of the benefits of the Illustrated Symptoms Tear Pad is its application in a multitude of settings and languages. With some minor language translation and a check on cultural sensitivity, we are eager to equip health care providers in low resource settings with this important patient and community education tool.

 
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"Loss makes artists of us all as we weave new patterns in the fabric of our lives."~ Greta W. Crosby, Author of Tree and Jubilee, a book of meditation

Writing about any situation will help you gain perspective on it. Many people find they can identify and express their feelings through journaling. This expression not only contributes to our self-awareness, it also contributes to healing through the letting out of emotions, self-acceptance, and the identification of any negative self-talk patterns that we should and can intentionally replace with positive thoughts.

We get to revisit and revise our thoughts as they ebb and flow. We get to acknowledge our sorrows; speak to, honor and love those we have lost; and find meaning so we can move forward with hope and strength. Writing need not be confined to prose. Prayers, poems, favorite quotations, and drawings often take wing on the pages of our journals.

We invite you to share your writing in the Writing Heals Forum on www.preeclampsia.org.

 
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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 from preeclampsia than anyone else? Older schools of thought attempted to use socioeconomic status as a reason to explain the problem, but it doesn't hold up under statistical analysis. Let's take my sorority sister, Dawn, as an example.

Dawn did not live in the ghetto. She didn't use drugs. She didn't have high blood pressure and she wasn't morbidly obese. She was the oldest of four children who grew up in my hometown of Queens, New York, graduated from college and became an urban radio host , first in Buffalo and then in Orlando. While in Buffalo, she became extremely popular and had listeners as far away as Toronto.

Dawn was 31 years old when she married and became pregnant. Because of her notoriety as a DJ, her pregnancy and death made the local news. She was 32 weeks and had been on bedrest. Her blood pressure became extremely high and the baby was delivered. The day after her delivery, she called her pastor with a request for prayer. But by the time he arrived that evening, she had had a stroke, lapsed into a coma, and died. Her baby lived, but her young husband became an instant widower. Her story, while uncommon, is not unheard of.

The actress and singer, Vanessa Williams and her mother, Helen, describe the death of her paternal grandmother from preeclampsia in their book, If You Only Knew.

Another African American woman suffered a "near miss" with her preeclampsia, but lived to tell her story on her popular blog. Angela Burgin Logan is a former Kraft Foods marketer and an editor for Lifetime TV. When she became pregnant with her first child, her complaints of weight gain, fainting spells and headaches went unheeded by her obstetrician. Angela ultimately had preeclampsia and cardiomyopathy that almost killed her. She never saw it coming but was so grateful to ultimately be alive that she and her husband produced a movie entitled Breathe.

When African American women have preeclampsia, its effects are severe and it presents earlier than in women of other races. We don't know why. More research is certainly needed in this area but in the meantime, African American women should be screened for potential high-risk conditions and be managed as if they will develop preeclampsia, especially if it's their first pregnancy. If that had happened, my sorority sister Dawn, might be alive today.

Linda Burke-Galloway, MD, MS, FACOG is the author of "The Smart Mother's Guide to a Better Pregnancy: How to minimize risks, avoid complications, and have a healthy baby." She is an author, speaker, Ob-Gyn patient safety and risk management expert.

 
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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 behalf of our client and their important and critical mission."

More than 1,200 entries were submitted this year for consideration in more than 90 categories, including Executive of the Year, Entrepreneur of the Year, Women Helping Women, and Communications Campaign of the Year.

More than 130 business professionals worldwide chose finalists during preliminary judging. More than 90 members of the five final judging committees determined the Gold, Silver and Bronze Stevie Award placements from among the Finalists during final judging.

Details about the Stevie Awards for Women in Business and the list of Finalists in all categories are available at www.StevieAwards.com/Women.

 
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