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Aiken (L) with daughter Macy Johanna Aiken is the 2013 recipient of The Preeclampsia Foundation's annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Aiken at its annual benefit dinner, Saving Grace - A Night of Hope, on Friday, October 18, 2013 in Iowa City. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation in the past year.

"Johanna has been an instrumental member of our volunteer leadership, helping to build the presence of our signature public awareness event, The Promise Walk for Preeclampsia™," said Executive Director Eleni Tsigas. "For the past three years, she dedicated herself as the Central Regional Coach and helped build numerous provider and patient education alliances in her local Chicago community. Johanna has been a tireless advocate not only for those who have been affected by preeclampsia, but for those who aren't here to speak for themselves."

This week, we asked Johanna about her experiences with preeclampsia and The Preeclampsia Foundation.

What was your experience with preeclampsia?

I am a HELLP Syndrome Survivor. I was diagnosed at 39 weeks while in active labor by the nurse admitting me. I had heard of Preeclampisa before and associated it with high blood pressure and bed rest, but had never hear of HELLP Syndrome. My symptoms came on in a matter of days, but I was unaware that they were anything other than normal symptoms of pregnancy. Thankfully, it was diagnosed early and managed successfully, so my daughter and I both made full recoveries.

Why do you volunteer for the Preeclampsia Foundation?

To spread awareness of the signs and symptoms to other pregnant women and women who become pregnant. I also volunteer to help educate health care providers about the Preeclampsia Foundation's existence and the many resources we offer to them, as well as their patients. In the four years I have been volunteering, I am still baffled by how many health care providers do not proactively talk about Preeclampsia, HELLP Syndrome and other hypertensive disorders to their patients, as well as how many providers have never heard about the Foundation as a resource.

What does it mean to you to be awarded the 2013 Hope Award for Volunteer of the Year?

It is a tremendous honor. While I am giving my personal time volunteering to raise awareness for providers and patients, I too feel that I have been given a gift that I must pass forward to others. My daughter and I both survived and are healthy. Many people's stories don't have such happy endings.

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

My co-worker was pregnant and knows I am involved in the Foundation. I had mentioned the signs and symptoms to look out for and in her last month of pregnancy began having some of them. As a result, she contacted her doctor and was carefully monitored, then induced two weeks early when her blood pressure got too high. The most gratifying thing about being a volunteer is knowing that I am directly helping others prevent infant and mother mortality by contacting their provider as soon as signs and symptoms appear.

What are your continuing goals for your work with the Foundation in the near future?

I love being involved in the Chicago Promise Walk, and helping the walk coordinators throughout the Central/Midwest region as a regional coach. I'm able to provide guidance and advice on how to plan and carry out their own walks, spreading awareness as well as raising money that goes towards patient and provider education and research grants to study the causes of Preeclampsia, HELLP Syndrome and other Hypertensive disorders.

Thank you, Johanna Aiken, and our many other tireless volunteers!

 

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Posted on in Health Information
GUEST LETTER
A Letter from the Director of National Institute of Child Health and Human Development (NICHD)

Editor's Note: As many or our supporters know, the rate of premature births is a growing issue in the US. In recent years, health care providers are emphasizing the distinction between "medically-indicated" premature delivery, such as in patients with hypertensive discorders, and elective premature delivery. Dr. Alan E. Guttmacher shares this letter in the context of the "ideal time of delivery" under normal circumstances. ACOG's Prematurity Awareness Campaign recognizes the special circumstances of women with preeclampsia and other hypertensive diseases of pregnancy."If the baby is growing very poorly in utero, delivering the baby may be safer. On the maternal side, women may get very sick during pregnancy with preeclampsia or diabetes, making an early delivery necessary," says George A. Macones, MD, chair of The College's Committee on Obstetric Practice.
 
________________
June 2013

As a new grandfather, the anticipation of awaiting the baby¹s arrival is still fresh in my mind. Although my stepdaughter was happily awaiting the birth of her first child, she had also grown a bit weary of the discomfort of that final month. Eventually, though, the baby came, the delivery went smoothly, and my stepdaughter and grandson are doing quite well. Although we all were impatient, as a pediatrician I knew that in a healthy pregnancy it¹s best that the baby sets the delivery date, not the grandfather or even the mother (or the obstetrician¹s schedule). Some families, however, request an earlier delivery, or the attending suggests inducing delivery for scheduling purposes.

 

True, there is sometimes a medical need to schedule delivery early. But for most pregnancies, it¹s best to wait. Babies delivered at 39 weeks have fewer health risks, such as breathing difficulties, cerebral palsy, and learning difficulties, than do those born even a couple of weeks earlier. Forgoing elective delivery may reduce these risks. If you¹re a mother to be, or know someone who is, I recommend you visit our Web page¹s discussion, Information for Moms to Be, of waiting until at least 39 weeks before delivering to find out more about the health benefits of letting the baby set the delivery date. The page was developed by the National Child and Maternal Health Education Program.

 

Alan E. Guttmacher, M.D.

 

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HEALTH INFORMATION
ACOG Recommends Routine Oral Health Assessments at First Prenatal Visit


Teeth cleanings and dental X-rays are safe for pregnant women, according to new recommendations issued by The American College of Obstetricians and Gynecologists. Ob/Gyns are now being advised to perform routine oral health assessments at the first prenatal visit and encourage their patients to see a dentist during pregnancy.

"These new recommendations address the questions and concerns that many Ob/Gyns, dentists, and our patients have about whether it is safe to have dental work during pregnancy," said Diana Cheng, MD, vice chair of The College's Committee on Health Care for Underserved Women, which issued the guidelines. According to The College, oral health problems are associated with other diseases, including heart disease, diabetes, and respiratory infections. "We want Ob/Gyns to routinely counsel all of their patients, including pregnant women, about the importance of oral health to their overall health," said Dr. Cheng.

More than a third (35%) of all women report they haven't been to the dentist within the past year. Approximately 40% of pregnant women in the US have some form of periodontal disease, including gingivitis (inflammation of the gums), cavities (tooth decay), and periodontitis (inflammation of ligaments and bones that support the teeth). The physical changes caused by pregnancy can result in changes in the gums and teeth. Periodontal disease during pregnancy is most prevalent among black women, smokers, and women on public assistance.

In many states, women who use Medicaid insurance for prenatal care may also have dental services covered. However, access to dentists remains a problem in many states, especially for low-income women.

"We can all reassure our patients that routine teeth cleanings, dental X-rays, and local anesthesia are safe during pregnancy," said Dr. Cheng. "Pregnancy is not a reason to delay root canals or filling cavities if they are needed because putting off treatment may lead to further complications." One potential benefit of improving a woman's oral health: It may decrease the transmission of cavity-causing bacteria from mother to baby. This can help lessen the future risk of cavities in children.

Ob/Gyns are encouraged to reinforce practical advice for their patients: Limit sugary foods and drinks, brush teeth twice daily with a fluoridated toothpaste, floss once daily, and visit the dentist twice a year. Pregnant women with severe vomiting (hyperemesis) or gastric reflux can help avoid damage to their teeth from stomach acid by using an antacid or by rinsing with a teaspoon of baking soda in a cup of water after vomiting.

 

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Some efforts to understand preeclampsia focus on risk factors and causes (or mechanisms). Understanding the "how" and the "why" of the condition could provide effective ways to prevent it from occurring or to slow its progress. Evidence shows that certain factors, such as pre-pregnancy obesity or a first pregnancy, put women at higher risk for the condition. A recent NICHD spotlight described some of the Institute's specific studies on the risk factors for preeclampsia, including studies on reducing risk.

 

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Posted on in MAKE A DIFFERENCE

Many words come to mind when describing a volunteer: devoted, inspiring, passionate. But those words feel pale and generic when faced with the deep motivation and strength that makes up the members of the Preeclampsia Foundation's volunteer core.

Volunteers come to our foundation for many different reasons: mourning the loss of a loved one. Mourning the loss of that "perfect" pregnancy experience. Celebrating their gratitude in having a new life. Honoring a loved one's experience which they can only hope to never personally understand. But they stay for one overwhelming reason. It is their desire that no woman and no family should feel as alone, insecure and frightened as one does when faced with an overwhelming health crisis like preeclampsia, HELLP syndrome or eclampsia. From improving prenatal education to engaging with health care providers to supporting families after their preeclampsia experience, our volunteers are a family who support impacted families through every step of the journey!

Last week many organizations celebrated National Volunteer Appreciation Week, but words are simply not sufficient to describe why we love our volunteers, because without them, this foundation would be nothing. We were started by "thoughtful, committed citizens," and we continue to push our mission forward through an ever-increasing number of those citizens.

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Posted on in Health Information

<p><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">GUEST BLOG FROM AMY DOLGIN</span></p>
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<p><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">I am a mother, a nurse, a public health practitioner, and a blogger. I started my blog, Birth Literacy, to provide women and their families with evidence based information about pregnancy, birth, and the postpartum period. Birth Literacy, is my own spin-off of health literacy, a public health concept that increasing knowledge about health leads to better, more positive health care experiences. <br /> <br /> Birth literacy is a process - we are all continually growing and learning, improving our birth literacy, and adapting our perspectives on birth. I continue to learn new things about pregnancy and birth all the time.  The more I learn, the more empowered I feel.  By providing evidence-based information, my own analysis of topic areas in the birth arena, and a venue for conversation and critical thinking about these topics, I hope to contribute to improved birth literacy.</span></p>
<p style="margin-bottom: 12.0pt;"><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">Little is written on applying the concept of health literacy to pregnancy and birth though. In 2001, Renkert and Nutbeam discussed the application of health literacy to maternal health, noting that pregnancy and childbirth education should shift, to be "focused on the development of the skills and confidence to make choices that improve individual health outcomes, rather than being limited to the transmission of information."  This shift though, would take a considerable effort given the time limitations of typical prenatal education. This is part of the reason that a blog seemed like the right venue for addressing birth literacy.  </span></p>
<p style="margin-bottom: 12.0pt;"><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">Through short blog posts, women and their families can gain valuable information, and read critical analyses on topics related to pregnancy and birth. I try to talk through my research in the posts as well, giving readers a glimpse into how to access and use reliable health information. The reading time is minimal, but the impact can be significant.</span></p>
<p style="margin-bottom: 12.0pt;"><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">I hope that building knowledge and improving the birth literacy of women and their families will empower my readers to use evidence-based information in pregnancy and birth.  The term Birth Literacy is in no way meant to suggest that people are birth illiterate.  Instead, it is intended as a goal: higher levels of birth literacy contribute to more positive birth experiences.  I continue to research and write about birth in order to increase my own birth literacy, in turn, helping my readers achieve positive experiences in pregnancy, birth, and the postpartum period.</span></p>
<p><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">Additional Health Literacy References</span></p>
<ul type="disc">
<li style="mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo1; tab-stops: list .5in;"><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">Nutbeam, D., and Renkert, S. (2006). Opportunities to Improve Maternal Health Literacy Through Antenatal Education: an exploratory study.  Health Promotion International, 16:4, 381-388.</span></li>
<li style="mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo1; tab-stops: list .5in;"><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman';">Nutbeam (1998). Health promotion glossary. Health Promotion International, 13, 349-364.</span></li>
</ul>
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<div style="font-size: 10pt;"><span>The risk of preeclampsia is higher in women with chronic hypertension (high blood pressure), but studies have shown that it is far safer to keep a woman's hypertension under control during pregnancy than to risk preeclampsia superimposed on top of uncontrolled chronic hypertension. The good news is there are many anti-hypertensive medications, and many of them have been successfully and safely used in pregnancy.</span><br /><br /><span>"For most drugs in the 2nd and 3rd trimesters, the indications for treatment outweigh potential risks. Treatment should be individualized to meet the specific needs of each woman," said Dr. Tom Easterling, </span><span><span style="font-family: 'Trebuchet MS', sans-serif; color: #666666; font-size: 12px;"><span style="font-family: Arial,Helvetica,sans-serif; font-size: 14pt;"><span style="color: #333333; font-family: Arial,Helvetica,sans-serif; font-size: 10pt;">director of the Foundation's medical advisory board.</span></span></span> "A few drugs such as angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor antagonists (ARB) do have a potential for harm and are used only under very limited circumstances."</span><br /><br /></div>
<div style="font-size: 10pt;">
<p style="margin-top: 0px; margin-bottom: 0px;"><span> A good source of online information is <a href="http://www.mothertobaby.com" target="_blank" style="text-decoration: underline ! important; text-align: left; font-size: 10pt; font-family: Arial,Helvetica,sans-serif; color: #772440 ! important;">www.mothertobaby.com</a>, a service of the non-profit Organization of Teratology Information Specialists, dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding.</span></p>
<p style="margin-top: 0px; margin-bottom: 0px;"><span> </span></p>
<span>It is important to be knowledgeable about your prescribed medications, and although you may read about them online, it is <strong><em>most important</em></strong> that you review all your medications and supplements with your pregnancy specialist.</span></div>

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A longer article from the Preeclampsia Foundation will be posted by the Association of Women's Health, Obstetric and Neonatal Nurses (AWOHNN) in May. Here are the highlights. A survey or our members brought to light the following top 10 ways nurses can be sensitive and helpful to preeclampsia patients.

1) Thank you for educating me to know the symptoms and how dangerous preeclampsia can be.

2) Thank you for being willing to listen and learn from the women you care for.

3) Thank you for being alert so that common medical errors are avoided.

4) Thank you for being sensitive to our vulnerable emotional states.

5) Thank you for showering us with compassion and kindness.

6) Thank you for being aware that due to our complicated pregnancy we are at risk of having post-traumatic stress disorder.

7) Thank you for effectively communicating to your colleagues when you transfer our care to other nurses.

8) Thank you for being honest with us.

9) Thank you for helping us and our families cope with loss or having a baby in the neonatal intensive care unit.

10) Thank you for remembering that we may be struggling with feelings of guilt for having failed at pregnancy.

The expert and compassionate care nurses provide to women who have preeclampsia is greatly appreciated and will be remembered for a lifetime.

 

 

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BY REBEKA WHITMAN

It wasn't until my sister Rikki became pregnant with her first child that I understood the full meaning of pregnancy problems. She was 35, had Ulcerative Colitis, an autoimmune disease, and had difficulty becoming pregnant. She and her husband were looking forward to the birth of their son. On November 8, at 22 weeks, she developed HELLP Syndrome and the only option was to deliver the baby. Rikki's liver, heart and lung functions were deteriorating significantly. As I waited at the hospital with other family members, I asked the doctor, "Can't you wait until he is a few weeks older so that he has some sort of chance?" The doctor told me if they could, they would, but unfortunately, looking at Rikki's vital levels, they couldn't wait."

That evening, Rikki and Nick made the most difficult choice any parent can make. They were told the baby would likely be born alive but there was little chance that he would make it. If they did not deliver, neither baby nor mother would survive. Rikki spoke with one of the NICU doctors and was assured that as long as the baby was at least 450 grams in weight, he could be intubated if he was struggling to breath. They attempted to induce labor and during the night Rikki's health deteriorated.

 

My nephew Reid Nicholas Ziska was born into heaven at 1:46 a.m. He did not take a breath, which I truly believe is a blessing because he was just short of the weight for intubation. He was the size of a Barbie doll. After my sister and her husband had time alone with him, the family was invited to see him. He was beautiful and looked like his daddy. We all held him and said goodbye. His birth and passing have truly changed my family and its life.

 

I wanted to find a special Christmas gift for Rikki and Nick that symbolized Reid but nothing seemed special enough. I decided maybe I could make a donation to a foundation they really care about and found the Preeclampsia Foundation website. After reading about the foundation, I spoke with my husband and we decided to set up The Reid Nicholas Ziska Memorial Benefitting the Preeclampsia Foundation. We would throw a party in honor of Reid.

 

Keeping the party a secret, I put together an invitation and information about what we wanted to do. I went all around Omaha asking for donations and auction items. Many people were touched and generous. I ordered rubber bracelets with Reid's name and preeclampsia.org printed on them. We ended up having an absolutely amazing turnout at the March 13 event. Little did I know that 175 people would attend. We ended up having $7,250 to donate which is about $6,700 more than I expected. Social media (Facebook) was one avenue that particularly helped.

 

I wanted to celebrate the fact that Reid came into this world and touched so many lives, and I wanted people to always remember what a special angel he is. I had known nothing about HELLP Syndrome before and wanted to share with others about it. I had preeclampsia and my baby and I survived. My sister had HELLP Syndrome and was not as fortunate. You never think you will lose a baby or it will happen to someone you love, but it can happen to anyone! I would love to be able to raise enough money to research these terrible diseases so that no family has to go through what ours did and no parents have to go through losing a precious baby.

 

If I can set up something so amazing in just over two months, then others can, too. People are extremely generous when they understand the impact of what you are trying to do. When it is close to your heart, they feel motivated to help. I was able to put a story on the local news, talking about the event and what we were trying to accomplish. I ordered the Preeclampsia Foundation's brochures about Preeclampsia and HELLP Syndrome, and I hope the people who attended the event read them.

 

My sister and I have never been closer than we are now. And I will always love Reid Nicholas Ziska.

 

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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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<p><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman'; color: #7f7f7f; mso-themecolor: background1; mso-themeshade: 128; mso-style-textfill-fill-color: #7F7F7F; mso-style-textfill-fill-themecolor: background1; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-colortransforms: lumm=50000;"> American College of Obstetricians &amp; Gynecologists President James T. Breeden, MD, raises awareness in his March blog about the trend in cesarean sections. "Today, one in three babies in the US are born by cesarean - the delivery of a baby through an incision in the mother's abdomen and uterus," wrote Breeden. "The rate of labor induction is also at an all-time high. Unfortunately, many of these births occur before the pregnancy is considered 'term' at 39 weeks. These upward trends have long been a source of concern in the medical community, especially considering the increased risks to a baby who may not be fully developed at delivery."</span></p>
<p style="mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Times New Roman'; color: #7f7f7f; mso-themecolor: background1; mso-themeshade: 128; mso-style-textfill-fill-color: #7F7F7F; mso-style-textfill-fill-themecolor: background1; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-colortransforms: lumm=50000;">Dr. Breeden also wrote about the urgent situations - such as preeclampsia, eclampsia, multiple fetuses, fetal growth restriction, and poorly controlled diabetes - that may make it necessary to deliver the baby before the onset of natural labor. <a href="http://acogpresident.org/2013/03/22/with-delivery-times-">Read Dr. Breeden's March Blog.</a><br /></span></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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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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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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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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Terrell and Kimberly Smith began 2012 with joy and anticipation as they planned for the arrival of their baby girl. But on March 12, they received the worst news of their lives: Kimberly's blood pressure hit 200/100 and her vitals were rapidly deteriorating. Their baby girl, Lauren Kelly, was gone at just 22 weeks due to severe preeclampsia.

The Smiths refused to let their tragedy go unheard: Kimberly reached out to the Preeclampsia Foundation and asked what she could do.

"South Carolina has never held a Promise Walk before, and even in conversations with various public health professionals, pregnant women, and women impacted by preeclampsia, many had not heard of the Preeclampsia Foundation," explained Smith. So she decided her goal was to bring awareness and support to the "wonderful work the Foundation is doing throughout our nation" by bringing the Promise Walk to her home state.

She has since partnered with local health care providers throughout the state and used her passion and the memory of her little girl to start making a difference in the health outcomes for other women. Kimberly also has a robust social media presence: not a day goes by that Kimberly isn't seen tweeting life-saving preeclampsia tips (check her out @MrsKimSmith and @SCPromiseWalk).

Although the first Columbia Promise Walk is only a few months away, Kimberly is already excited for what is shaping up to be an amazing event, with fun kid zone activities, a beautiful survivor and memorial storytime, music, and lots of activities with community partners. Ultimately, she hopes that her event can help give others who have shared similar experience the hope that they are not alone.

The first Columbia Promise Walk for Preeclampsia will be on Saturday, May 18, 2013 at Riverfront Park in Columbia, South Carolina. Volunteers, sponsors and walkers welcome!

 

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It is the time of year where I spend quite a bit of time reflecting. Since our son's angelversary was December 28th, it's natural to think not only of the past year, but also of the time our lives changed forever. It has been 7 years now since that day and I can honestly say that I would have never believed I would be where I am today. A few weeks after the loss of our son, I was researching on the internet to figure out what happened to me when I found the Preeclampsia Foundation. It was perfect timing to bond with other bereaved parents on the forums. I found healing through the community of sharing our losses and our grief. It was easier to bare knowing there were others I could turn to that had experienced the same devastation. I spent alot of time on the forums and through my time there was where I felt the need to give back. I made it through the blackest of days thanks to those ladies. I knew if I could do it, so could others. I not only wanted to help families avoid my heartache, but help those that that unfortunately found us the hard way. In doing so I found out that I healed more and more myself. The hard days became fewer and farther apart. Then once I started, I couldn't stop. I had to do more and more. Every time I read of another loss, I get mad and my determination doubles.

This past year, I was asked by a reporter where would I be without the Preeclampsia Foundation. I didn't have an answer for her and I've spent many months trying to put the response into words. I can guarantee that I would have become a very bitter person towards anyone with simple and successful pregnancies. The volunteer work that I do has given meaning not only to my life, but to Cooper's. I refuse to let his life be meaningless. That desire has fueled plenty of sleepless nights thinking of ways to change the world. I have met any amazing group of women across the country that are now some of my closest friends. Even though most of them didn't suffer a loss, we are still bonded by harrowing pregnancy experiences. Almost like our own sorority. These ladies know deep down what it's like to have zero control of your situation. And I know that if I ever have another pregnancy, the members of the Preeclampsia Foundation will be there to support me no matter the outcome.

Volunteer Nicole Purnell is the Preeclampsia Foundation's 2012 Volunteer of the Year.

 

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Posted on in Preeclampsia Information

Keri developed severe preeclampsia at just 24 weeks pregnant and was forced to deliver her baby shortly thereafter.

Her baby girl Millie was extremely premature and weighed just 1 lb. 1 oz. She needed intensive medical care and Keri was by her side day and night.

A few days after Millie's birth, Keri set up a CaringBridge site to stay in touch with loved ones. "I had so many friends, co-workers and family members who wanted to know how to support me and who were asking for information about how Millie was doing," said Keri. "One hundred percent of my time and energy - emotional, mental and physical - was being spent on my baby and I had nothing left with which to reach out to people."

CaringBridge patient websites make is easy to share health news and receive support from everyone who cares. Using CaringBridge reduces time and emotional energy spent on repeated phone calls and emails and connects a person's entire support community. By following a few simple steps, a personalized website complete with privacy options can be started in just minutes.

"Millie's page on CaringBridge was invaluable to me. It allowed me to easily share pictures of her and provide information about her status in the NICU," said Keri. "Even more important than that it allowed me to get support from so many others."

Every night after Keri returned home from the NICU, she would read the messages in the guestbook and take comfort in the words left for her there. "Never before did a few words from so many people mean so much to me," said Keri.

Millie put up a huge fight to stay alive. She made it through two surgeries, countless other medical procedures, and 25 days in the world when she should have still been in the womb. Unfortunately she passed away from renal failure brought on by extreme prematurity. Her CaringBridge site is now a bittersweet journal of her life.

"I would have no hesitation in recommending CaringBridge to other parents of preemies or to anyone facing a serious health event," said Keri. "I appreciate that even two years after my baby's death her page is still 'open' and there's no pressure to close it."

To learn more about creating your own CaringBridge site, visit www.CaringBridge.org.

 

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What was your experience with preeclampsia?

 

On February 17th, 2005 I was so blessed to become a mom to a beautiful, blue-eyed, baby boy. Roddick was born 2 weeks early, by emergency c-section, due to my blood pressure staying elevated, even with bed rest. My husband was out of town for work, so he missed the birth of his 1st child. It was crazy, nurses and doctors running around trying to get me into surgery and deliver my son. Much of the delivery was a blur. They had me on and off mag sulfate to control my bp. I felt so awful, I kept thinking that this surely couldn't be what it felt like to be a new mom. I felt so bad that I didn't even have the warmth and compassion I should have had for my newborn. The next day my situation declined. I was in my room alone with my newborn son. I decided that I needed to get up, get to the bathroom and freshen up. I pulled Roddick's basinet into the bathroom with me, washed up, and headed back to the bed. I was completely exhausted! I finally got settled back into to my bed. As Roddick lay sound asleep in his basinet next to my bed, I noticed that the letters and numbers lifted up off of the tv screen I was watching, and started to float across the room. I thought that was really weird. I decided that I better call the nurse and let her know. By then it was too late. There, alone, I had my 1st eclamptic seizure. I'm not sure of what happened exactly, I don't remember anything until a day or so later, after which I had experienced ANOTHER eclamptic seizure. I woke up, finally, in the ICU. On the wall, across from the end of my hospital bed, hung a picture of my sweet little baby boy. This picture was the only way I was able to see him for several days. It felt like my heart was broken. This was my 1st of 3 experiences with preeclamptic pregnancies; 3 preeclamptic pregnancies and my babies and I were blessed to survive.

 

My brother, a Physician's Assistant, had never seen anyone go through what I went through. A week or so after I was discharged from the hospital, he was able to use my experience to help diagnose, and treat, a woman in his ER. I believe my experience may have helped to save her life.

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


I have always felt that my doctor didn't 'scare' me enough and I wasn't told much about preeclampsia. I was put on modified bed rest, but since they didn't seem too concerned, I didn't see the seriousness of the situation. So modified bed rest, to me, was just putting my feet up a little more often. I could have done so much more to take care of myself and my baby. I later learned that this particular doctor had never had a patient experience eclamptic seizures. When I asked this doctor if I should see a perinatologist for my next pregnancy, she said "I don't see why. Your blood pressure was never really that high." Needless to say, I found another doctor and I made sure to find out all I could about preeclampsia and eclampsia.

Why do you volunteer for the Preeclampsia Foundation?


I feel so very strongly that we need to do all we can to spread the word about preeclampsia and other hypertensive disorders. Most importantly to find a cure so that lives can be saved. I'm hoping that doctors will find a way to communicate with their patients about the seriousness of these disorders.

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


I have spent the last year training for a 50 miles trail race. The race will take place December 15, 2012 on Look Out Mountain in Chattanooga, Tenn. I decided to run this race in remembrance of all the lives that have been taken by hypertensive disorders of pregnancy and also to celebrate being a survivor of preeclampsia & eclampsia. I made a goal to raise $2012 for the foundation. During this year of training, this has really become so much more to me. It has been an emotional ride (or run, I should say) and I'm excited to step foot on the trail and give it all I've got. No matter whether I finish the race or not, I've still won the battle.

 

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


Being able to bring awareness of these disorders to people who would have otherwise had no idea about them. Since I'm a survivor, I know first hand what it's like to experience preeclampsia and eclampsia. I'm invested in it and therefore I can relay the importance for fundraising and finding a cure. It feels wonderful to know that donations are coming in and we are getting one step closer to finding a cure!

 

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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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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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