Posted on in Research

At the Society for Gynecologic Investigation (SGI) Annual Scientific Meeting in San Diego, Calif., in March, the Preeclampsia Foundation, in collaboration with lead authors Dr. Ineke Postma, Dr. Gerda Zeeman, Dr H. Groen of the University Medical Center Groningen, the Netherlands, and Dr. Thomas Easterling of the University of Washington, presented a poster on cognition, quality of life and social functioning after a hypertensive pregnancy. Many formerly preeclamptic women report difficulties with memory or word choice postpartum, but so do many women with normal pregnancy courses. The unanswered question: what is the likelihood that preeclampsia causes brain changes independent of pregnancy itself? If there are preeclampsia-specific changes, can those be separated from the trauma of a medical crisis?

Enrolling more than 1,000 participants in this study, the Preeclampsia Foundation's survey queried women with (cases) and without (controls) a history of hypertension in pregnancy. Participants anonymously completed an online survey assessing their cognitive functions, their quality of life, and their social functioning. The study found that the population of women with a history of preeclampsia scored statistically significantly lower on all three assessments. Although there was significant overlap between the populations, the average score for the populations as a whole was shifted - which suggests that there is actually real change triggered by preeclampsia - and that shift persisted after the populations were adjusted for things that could potentially affect the scores, like current use of blood pressure medication. Seizure was particularly strongly correlated with long-term cognitive difficulty. The study will also be presented in July at the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress in Geneva, Switzerland.

"More and more information is emerging suggesting that preeclampsia is a condition with long term implications," explained the lead author on the study, Dr. Ineke Postma. "Preeclampsia can be a very emotional and sometimes traumatizing experience with some women complaining about ongoing memory or attention-deficit problems. In order to provide adequate long term support to preeclampsia survivors, we need to identify the actual scope of the problem. This study is an important step in that direction."

Although this study used subjective neurocognitive testing (that is, the questions and test were not administered by a separate researcher, but self-reported), the study has some potential weaknesses, but it is an important step to investigating this question: does preeclampsia result in some level of permanent damage to your brain?

These kinds of research collaborations are but one way we catalyze research. See our research section for more information about our research initiatives.

 

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On May 24, 2012, the U.S. Senate passed the Food and Drug Safety and Innovation Act, which reauthorizes funding for activities related to the drug and device approval process at the U.S. Food and Drug Administration (FDA). The legislation also includes requirements and provisions for faster review of new and innovative therapies in order to allow patients to be able to access these therapies more quickly. The next step is for the U.S. House of Representatives to pass the bill, and then a final bill will go to the President for signature.

During debate on the Senate bill, Senator Mark Warner (D-VA) spoke on the necessity of finding ways to strengthen and improve the FDA’s review process of new and innovative diagnostic tests, including biomarkers. While biomarkers are not specifically addressed by the legislation, during his remarks, Senator Warner specifically cited preeclampsia as an example of why the country needs to move biomarkers forward and develop a better process for the FDA to work with industry. The following is a copy of the Senator’s remarks as recorded in the Congressional Record:

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

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

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

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

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

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

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

 

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Posted on in Research

Every two years, the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress brings together the top researchers and clinicians in the field of hypertension in pregnancy to share innovations and encourage collaborations in research and clinical practice. As in year's past, the Preeclampsia Foundation participated in the 2012 meeting held July 9-12 in Geneva, Switzerland.

Like the current Olympics which inspire us to "Citius, Altius, Fortius" (Latin for "faster, higher, stronger"), the World Congress inspires participants to demonstrate new found knowledge and skills, and to push each other forward. In the enthusiasm of science-swapping and networking at a meeting like ISSHP, sometimes the larger purpose of our endeavors - saving lives and improving health outcomes of mothers and babies worldwide - may be forgotten by those racing from one intriguing lecture to the next.

That's where the Preeclampsia Foundation comes in. It is a testament to the extraordinary outreach of our mission that not only are we widely recognized as a key patient resource by individual health care providers, but are sought out by industry leaders as THE voice to provide a reminder of the patient perspective amongst the plethora of science and research. Our impact can be summarized in that one word: "voice." By joining our members' collective experiences along with the experience of wonderful new friends from European patient advocacy groups, we have become a powerful entity for change. A voice that is not only heard, but valued.

The Foundation's efforts to improve health care practices and catalyze research were also felt at ISSHP. Two investigators presented research findings developed through our collaboration in the Brain Study- and for many of our readers - it was your participation in this study that provided such meaningful data. In one oral presentation, findings suggested an association between history of preeclampsia and post-traumatic stress disorder. In the other, findings suggested an increase in neurocognitive disorders among women with history of preeclampsia. Both studies are being developed for publication and will be promoted via this newsletter when they're published. Both studies were exceedingly well received, with other researchers encouraging us to conduct further studies on long-term patient impact to improve clinical care.

We also presented two research travel grants, which helped promising young investigators attend this important meeting, interact with seasoned researchers, and become committed members of the hypertension in pregnancy community.

Every day, our website and social media platforms receive thousands of visitors from more than 200 countries around the world, so it was particularly wonderful to meet global health care providers who interact with those patients and who themselves use our website regularly. Unfortunately, we are sometimes the only source for additional patient support and education. So though no one received any laurel wreaths or gold medals during the Foundation's international journey, the patients are the real victors through the furthering of global preeclampsia research.

 

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Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!

However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.

An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, and make educated decisions. And if she doesn't have the appropriate relationship with her providers, she is confident about asking for what she needs or seeking help elsewhere.

Sometimes it takes a third party to help her get what she needs. A trusted partner, family member or friend sometimes fills that void. Often, our Community Forum becomes that life-saving voice that pushes her to seek immediate medical attention and acknowledge that inner voice that says something just isn't right.

A great example is this case, when Jonathan Barker became a worried husband, got involved in his wife's care and later said, "One piece of advice that the moderators on the Foundation's Forum always shared is that preeclampsia can strike at any time and can get very ugly, very quickly. It is a piece of advice that made the difference." And if you want a laugh about this empowered dad stepping in, read about his experience shopping for nursing bras. That's one lucky wife!

A recent mom had extreme birth anxiety, which is not uncommon for preeclampsia survivors. She advocated for herself and was able to get a sedative during delivery, improving her birth experience considerably.

A mom who had lupus, putting her at much higher risk for preeclampsia, wasn't receiving the kind of care or information she should have. She changed providers thanks to the encouragement of her online support system. Later, despite having preeclampsia, she wrote, "Thank you guys so much! I couldn't have gotten to this finish line without you! I was so knowledgeable and cautious. Got that from this website!"

These stories and many more confirm the importance of sound information and strong support guiding your role as an empowered patient, one of the hallmarks of patient-centric care.

I want to thank Heather Curtis and all our Forum moderators for the smart and empathetic support they provide every day. It's not an understatement when we say they have literally saved lives!

 

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That was my goal with the once-in-a-lifetime opportunity I was given to present one of three President's Program lectures at the American College of Obstetricians & Gynecologists' Annual Clinical Meeting.

"Patient Perspectives on Preeclampsia" - or as I joked, "lessons from this side of the stirrups" - was well-received by the standing-room-only crowd in the main auditorium of the San Diego Convention Center. More importantly, the many comments I received after the lecture satisfied me that I achieved my objective - to reach their hearts with compelling, real-life stories illustrating the impact preeclampsia has on mothers, fathers, and babies; and to reach their minds by inspiring clinical practice behaviors that include educating each and every expectant mother with non-alarmist, but sound information about the signs and symptoms of preeclampsia, as well as addressing the psychological and long-term physical impact of the disease. (Presentation available for purchase)

If you have ever shared your experience with us, know that you, and the stories of 10,000+ other women, were with me in spirit on May 7. The ACM News wrote about my presentation and the other two preeclampsia lectures (delivered engagingly by renown preeclampsia researcher Dr. James Roberts and clinician Dr. John Barton).

The awareness and education theme was echoed in a Foundation news announcement at the San Diego Promise Walk. With co-authors Dr. Doug Woelkers and Ms. Jennifer Carney, we announced our official list of the Top 10 Pregnancy Guidebooks. This report was created using five criteria designed to ascertain how well the books treated the topic of preeclampsia in a way that would be useful to the one in 12 pregnant women whose pregnancies become complicated by it. Several of the top guidebook authors have already contacted us, thankful that their diligence has been recognized, even while women's real-life feedback has reinforced our findings that the bestsellers aren't always the best books.

And although I'm no Twitter expert, it was fun to join College staff and two Ob/Gyn physicians on a Twitter Chat on preeclampsia that resulted in tens of thousands impressions, and to shoot a quick interview that was aired onsite for the 5,000+ people in attendance.

By all accounts, the entire experience left us all exhausted, but exhilarated. We frequently tout the importance of a patient-provider relationship and it was abundantly evident that the country's leading Ob/Gyn organization shares this goal. We are very grateful.

 

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<p>Who can stay "heart healthy" when they're trapped inside looking at a blanket of snow? Hey, unplug the snow blower and get out your shovel... or better yet, grab a sled and revel in it! In all seriousness, we wish our friends across the preeclampsia universe warm cups of hot cocoa. And for those in the warmer climes, yours truly included, there will be no boasting about too much sunshine!<br /> <br />Thanks to St. Valentine's Day, February has been embued with images of hearts and emotions. The <a href="http://www.goredforwomen.org" target="_blank">women's heart movement</a> has adopted the month and we would be wise to pay heed to those healthy heart messages. After all, preeclampsia survivors - particularly repeat offenders - have double the risk of developing heart disease in the next 5 to 15 years of our lives. If your physician hasn't asked you about your pregnancy history, make sure you let her or him know all about your pregnancies - the good, the bad and the ugly. It matters. See our newest brochure <a href="http://www.preeclampsia.org/market-place" target="_blank">Preeclampsia &amp; Heart Disease</a> to learn more about how significant your pregnancy history is to your future heart health. And if you were waiting for the right reason to lose weight, eat right and start exercising and haven't found the mirror shouting at you, then look at your family and tell yourself that they are worth it.<br /> <br />As for the emotions related to February, we're debuting a new feature this month - <a href="/forum/viewtopic.php?f=14&amp;t=41702" target="_blank">Writing Heals</a>. So many preeclampsia survivors have found solice, meaning, analysis and even life-long missions through the writing process. Following my own perinatal loss, I stumbled upon an all-day workshop called "Writing Through Loss" that gently and yet purposefully led me through one of the most healing parts of my grief journey. Ty Allen explains this new project and leads us to a special spot in our<a href="/forum/viewtopic.php?f=14&amp;t=41702" target="_blank"> Community Forum</a> to post your poems, essays or freeform thoughts, all part of the healing process.<br /> <br />This past month we were saddened by another mother lost to preeclampsia. <a href="http://www.knoxnews.com/news/2011/jan/29/raising-ruby-up/" target="_blank">Kristin Coker</a> in Tennessee, died of post-partum eclampsia after giving birth to her beautiful little girl Ruby Evelyn. If that makes you sad, or more appropriately, mad, please take a few minutes to fill out our <a href="http://www.zoomerang.com/Survey/WEB22BQVRAJL9T" target="_blank">Advocacy Survey</a>. What's the connection? Among the many issues we must grapple with is the lack of accurate data about maternal and perinatal deaths in the US. We know these numbers are under-reported. A very few states have tackled this problem, and then gone beyond to not just ask "How many are really dying?" but "Why?" and "What can we do about it?" We, as an organization of emboldened patients, must also ask those and other equally challenging questions. Answers from our Advocacy survey will help us allocate resources and attention to the most important issues that matter to you. Please let us hear your voice.<br /> <br />With that, warm up the hot chocolate, shovel a few more feet of snow, love your family and luxuriate in a moment of knowing that there's a huge "family" who cares deeply about your concerns and experiences with preeclampsia. And, as always, I'd love to hear your feedback. How did you use writing or any other techniques to heal from your preeclampsia experience?</p>

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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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Our Foundation has a growing mission to emphasize the need for monitoring and care for hypertensive moms postpartum for physical AND emotional needs. We asked our Facebook Followers these questions, in the wake of THE DAILY BEAST's recent article: "Why Are America's Postpartum Practices So Rough on New Mothers?"

  • Are the US's postpartum practices too trying on new moms?
  • What did you think of your postpartum experience?
  • What would you have done the same or differently?

We received multiple comments on Facebook and then set up a discussion in the Community Forum on our website. Many of you had both good and bad experiences during your postpartum period. For example:

I was lucky to have my mother in law's support for two months. Severe postpartum PE took nearly all the wind out of my sails.
I spent the 60 days after an emergency c-section under general anesthesia going back and forth to the NICU to visit my child. Restful, recuperative--no. So stressful.

We heard reports of going home from the hospital after preeclampsia and delivery only to have to return days later with postpartum preeclampsia. We heard reports of blood pressure becoming a chronic problem after delivery and concern over lifetime blood pressure challenges. And, there were reports of grief and depression. For example:

At my 2-week postpartum checkup, my doctor said everything looked fine. The very next day I was in the ER with kidney failure and congestive heart failure.

What's not fair is losing my baby due to severe preeclampsia and then not only do I not have a baby here with me, but now I have blood pressure issues. Constant reminder of my baby being gone because of preeclampsia. On top of high blood pressure has been everlasting depression.

One thing we know from the tens of thousands of posts made by participants of our Community Forum is that you really appreciate the support of others who have had similar experiences. Another thing we know is that you like the advice of other moms, not just medical experts. We recommend you visit the conversations in Ask the Experienced, and share your postpartum experience at Postpartum Experiences in the US: Are they too trying?
 
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If you're a new mom, your own heart health may be the furthest thing from your mind, but if you're a preeclampsia survivor, it's something you and your physician should discuss. Why? Because research has shown that preeclampsia, along with a few other pregnancy complications such as fetal growth restriction and preterm birth, may predict your future heart disease.

Studies have found the following associations between pregnancy complications and cardiovascular disease:

  • A history of preeclampsia increases future risks of high blood pressure, heart attacks, stroke, blood clots, and kidney disease.
  • Women who have repeat or severe preeclampsia, or preeclampsia accompanied by still birth are at greater risk of cardiovascular disease than women who have high blood pressure only and during a single pregnancy.
  • Women who had growth restricted babies or who delivered preterm were found to have higher blood pressure 18 years after delivery.
  • The risk of pregnancy complications and later cardiovascular disease is cumulative. Women who experienced preeclampsia, preterm birth, and fetal growth restriction were found to have 7 times the risk of hospital admission or death from coronary artery disease.

This and other pregnancy and heart health information can be found on Seconds Count, the patient information website of the Society for Cardiovascular Angiography and Interventions (SCAI). Experts there suggest 6 questions you should ask your healthcare provider about pregnancy complications and heart disease:

  1. I had high blood pressure during pregnancy. Are there steps I should be taking now to monitor my heart health?
  2. I had a fetal growth restriction complication or delivered a preterm baby. What should I be doing for my best cardiovascular health?
  3. What risk factors (unrelated to pregnancy) do I have for cardiovascular disease, such as diet, family history, etc.?
  4. Do any of my test results indicate risk factors for heart disease, such as high cholesterol?
  5. Do my overall risk factors or risk factors related to pregnancy suggest that I should be referred to a cardiologist?
  6. Are there lifestyle or medication changes that would benefit my heart health?

Sadly, a study by Rana, et al (2011) found that a substantial proportion of internists and OB-GYN physicians at a major hospital in Boston were unaware of any health risk associated with a history of preeclampsia. The authors concluded that this deficiency may affect the clinical care they provide. That means that as the patient, you may need to print out this information and take it to your physician so they know why your pregnancy history matters.

It's unlikely you will need stents or bypass surgery, but a good number of preeclampsia survivors report difficulty getting their blood pressure to return to normal and may need, even temporary, medications to normalize their BP.

John P. Reilly, M.D., FSCAI, editor-in-chief of SecondsCount.org and Vice-Chairman of the Department of Cardiology at Ochsner Medical Center in New Orleans said, “We are committed to informing our patients and other healthcare providers about the link between preeclampsia and future heart disease, and the importance of managing cardiovascular risk factors in preeclampsia survivors.”

However, without solid evidence for what post-preeclampsia follow up care should include, what should you do? Experts in the field have helped us develop these common sense guidelines to reduce your risk of heart disease:

  • Eat a heart healthy diet and get regular exercise.
  • Stay at a healthy weight, specifically a BMI of 25 or less.
  • Don't smoke.
  • Talk with your doctor about your specific family health history, your pregnancy history and the benefits of taking low dose aspirin.
  • Know your numbers - blood pressure, cholesterol, and blood glucose - and ensure these stay in the healthy range.
 
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By Dr. Linda Burke-Galloway ~ October is Patient Centric Care Month, a term you will likely see more of as our healthcare system moves further into the 21st century. What does 21st century healthcare look like? It means that all of your records will be computerized and not on paper. It means that you will receive your "chart" on a flash drive so that when if you leave your physician's office and go to a hospital, your health records remain with you. Gone will be the days when your labs will have to be repeated because no one can locate your prenatal chart. Repeating labs is not only annoying, it's costly.

"Patient Centric Care" means that the emphasis will no longer center on your physician. Or a hospital. Or an ambulatory care center. It will be centered on you, the patient. Why? Because at the end of the day, if you're not well, if the outcome was less than expected, then the system has failed. The $2.3 trillion dollars spent each year on healthcare has not provided a "return" for its investment.

Traditionally, the physician or healthcare provider was looked upon as an authority, but you, the patient, have now taken center stage. Under patient-centric care, healthcare providers will function more like coaches and you, as the patient, will be expected to become more involved in your care. For a pregnant mom, this is critical. Gone will be the days of physicians "rushing through patients," barely listening to the fetal heartbeats and missing important clues that could compromise your care. Why? Because of the use of electronic medical records and the new system of "pay for performance." The electronic medical records have safety measures programmed into its system making it difficult for doctors to miss important red flags. Physicians will not be paid based on their number of office visits but by the outcome of the patient. Did the care provided by the physician improve the patient's health? That is the basis by which they will be paid.

One of the main reasons for missing a diagnosis of preeclampsia is that someone is not paying attention. Somewhere during the course of your care, someone drops the ball. The blood pressure that has been creeping up for the past 2 visits is not addressed. The protein in the urine ignored. The 5-pound weight gain in one week overlooked. The new complaint of a headache not heard. Unfortunately preeclampsia does not always present in textbook-fashion in the manner that we were taught in medical school. It has many disguises and there must be a high index of suspicion for those disguises to be recognized.

In business, there is something called a "butterfly effect" where one "small" missed detail can cause big problems. The same principle can be applied to medicine. When a "small" risk factor of a patient is overlooked, it places her in harm's way. Women who are pregnant for the first time, especially those who are under 18 and over 35, are at risk for preeclampsia. All African American women are at risk. Women who have a history of hypertension are at risk. All of these patients should be duly informed at their first prenatal visit of the potential for developing preeclampsia. The purpose is not to alarm but to inform.

Patient-Centric-Care Month is a time for celebration. The patient has finally returned to center stage. Although long overdue, better late than never.

Linda Burke-Galloway, MD, MS, FACOG, is the author of The Smart Mother's Guide to a Better Pregnancy, one of the Top 3 books in our Report on Pregnancy Guidebooks. She is also an Ob-Gyn Patient Safety and Risk Management Expert.

 
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Professors Chris Redman and Isabel Walker, co-authors of Pre-eclampsia: The Facts (Oxford University Press 1992) and co-founders of Action on Pre-eclampsia (APEC) in the UK, are seeking input from members of the Preeclampsia Foundation for their latest book, The Pre-eclampsia Survival Guide.

The new book, also co-authored by Joyce Cowan, a midwife who is Director of New Zealand APEC (NZAPEC), will be a comprehensive guide to pre-eclampsia for women and midwives. It will cover everything from historical theories to current treatments; from causation to detection; from prevention to management. It will be rooted very firmly in the real experiences of women who have suffered pre-eclampsia - and that's where you come in.

The authors are keen to illustrate their key points with real life case histories gathered from several different parts of the world. You could be part of this process by contributing to an online survey. Your input will only be used for the book, not any other research studies.

The Pre-eclampsia Survival Guide is expected to be published in the spring/summer of 2013. We will be reviewing the book in draft form to ensure that North American management practices are represented, since the intended audience includes all English speakers worldwide and, of course, we will have the finished product available in our Marketplace.

Despite conflicts over the hyphen in "pre-eclampsia", our universal understanding and management of the hypertensive disorders of pregnancy is mostly aligned in high resource countries. As with most medical issues, there will always be a variety of opinions, especially in a disorder with the moniker "the disease of theories", but we expect this will be a very sought after and trusted reference book for patients and providers alike.

 

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Findings from several studies support the hypothesis that stress caused by a traumatic pregnancy and delivery can often override the ability to emotionally cope, leading to psychiatric complications such as post-traumatic stress disorder (PTSD) and post-partum depression (PPD). The combination of suffering a serious illness, combined with an unexpected caesarean section, birth of a premature child, or infant loss, is a heavy burden to bear both physically and psychologically.

Preliminary research findings, including a study initiated by the Preeclampsia Foundation, suggest that women who have endured traumatic pregnancies such as severe preeclampsia, eclampsia and HELLP syndrome have a higher incidence of PTSD and PPD than women without these complications. More research is needed to help move this information to clinical practice, but anecdotally enough of our survivors are impacted, that we offer these recommendations based on general trauma recovery practices.

Be patient. Recovery is an ongoing process with a different pace for everybody. However, if you are unable to care for your children or basic responsibilities of life, you should seek professional help. Coping mechanisms that may work for you may not work for your spouse or other family members, and vice versa. Healing doesn't mean you will have no pain or bad feelings when thinking about the pregnancy experience, but that you can develop more confidence to be able to cope with your memories and feelings.

Understand your pregnancy experience. Communicate with health care providers to understand the medical and emotional aspects of the experience. If necessary, ask to be referred to a qualified counselor. Whether you are dealing with the loss of a child, the loss of your health or the loss of your “sought after” pregnancy experience, mental health professionals can help you recover normal functioning in life skills. Plus, the Preeclampsia Foundation has great online and print health information resources for you and your family.

Stay connected. Research shows that good social support is vital to recovery. Stay connected in particular with your family and friends. You might also consider joining a support community, whether it is signing up for the Foundation’s Community Forum (www.preeclampsia.org/forum) or contacting your local health department or hospital services for a grief support group. Also, don’t forget that if you are in a relationship or married, severe trauma can be challenging to both partners, so be proactive to strengthen that vital relationship.

Find a great hobby. Not only does it boost your self-esteem, you will connect with people who share interests that are outside of your pregnancy experience. Find a subject about which you are knowledgeable and passionate. For instance, many women find comfort in the life-affirming aspects of nature: go for walks, start a gardening project, or volunteer at a local park or animal sanctuary.

Keep a journal. By writing things down, you can temporarily dissociate yourself from the world and start to chart your road to recovery. Write in it every day, even if it is only to state three good things that have happened that day.

Set goals. Start by setting small goals and commit to doing it. Make a list of all the things you used to enjoy and revisit them. Decide which one you are going to focus on and make a small start. Someone close to you can help you be accountable for your progress… or even join you to complete those goals!

For more information about PTSD or PPD research, or citations for these recommendations, please email info@preeclampsia.org.

 
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