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BY ELENI TSIGAS, EXECUTIVE DIRECTOR OF THE PREECLAMPSIA FOUNDATION

On May 3, 2013, this article appeared in IMPATIENT OPTIMISTS, a blog of the Melinda & Bill Gates Foundation.

Preeclampsia is – depending on the country– either the first, second, or third leading complication of pregnancy that causes death – either to the mother or baby. And the reported statistics do not include the morbidity and “near misses” that go unreported. Preeclampsia is a life-threatening disorder that occurs only during pregnancy and up to a few weeks after delivery. Preeclampsia and related disorders such as HELLP syndrome and eclampsia affect about one in ten pregnancies and are most often characterized by a rapid rise in blood pressure that can lead to seizure, stroke, multiple organ failure and death of the mother and/or baby.

So what can we do about it?

As executive director, I frequently talk about the Preeclampsia Foundation’s mission running on two parallel tracks: One track must be focused on what we know today – what must we do better with what we already know? Right now, we know that in order to address preeclampsia we must ensure an accurate and speedy diagnosis, followed by high quality care (which includes access to magnesium sulfate), and access to facilities and expertise to care for premature babies. The other track, however has our headlights aimed far ahead, investing in research and envisioning a future where preeclampsia is prevented or at the very least effectively treated with something other than delivery of a preterm baby.

It is with this mindset that I eagerly participated in the World Health Organization’s (WHO) invitational workshop in late April, in Geneva, to determine the research priorities for maternal and newborn health between now and 2025. With the 2015 deadline for MDG 4 and 5 looming, it’s time to start looking beyond it, particularly since it’s unlikely we will meet the maternal and infant mortality reductions specified in these Millennium Development Goals.

As home to the global headquarters for the United Nations, World Health Organization, and World Council of Churches (among others), Geneva’s multiculturalism reminds me of how important the international part of the Preeclampsia Foundation’s agenda is and how broad our perspective and sensitivity needs to be, for women and babies in Kansas and Kenya.

As those in attendance poured over hundreds of questions, I was struck by how far away the year 2025 seemed, and yet much of our debate around the hypertensive disorders of pregnancy mirrored conversations we had a decade ago. We know what works to treat preeclampsia. But we must focus on a forward-looking agenda to understand more about what causes preeclampsia—and how to prevent it. While treatment including magnesium sulfate and antihypertensives are critical components to an obstetric kit today, neither medical intervention ever bought a 24-week baby another six weeks in a healthy womb.

Surely by the time my children are having children we will understand the root cause of this disease so that interventions can prevent it from occurring in the first place, somewhere in the first trimester, or even before conception.

We call upon the international community – policymakers, researchers, clinicians and funding organizations – to not settle for incremental solutions. When countries of limited resources try to tackle preeclampsia, all energy is applied to magnesium sulfate – access, acceptance, and ability. Unfortunately, the discussion often ends there – as if that alone will solve the medical conundrum of preeclampsia/eclampsia that leaves mothers and babies ill or dead.

As a case in point, the seminal Magpie Trial was stopped early when there was overwhelming evidence in favor of the intervention— magnesium sulfate more than halved the risk of eclampsia, and reduced the risk of maternal death by almost half, compared with a placebo.

Those are strong, conclusive findings by anybody’s analysis, unless you were a family member for one of the women for whom it did NOT prevent eclampsia, or death, or severe morbidity. Or for whom a baby was stillborn or born entirely too early.

Make no mistake, magnesium sulfate – as with antihypertensives - is a critical first step and we’re greatly supportive of the thinking underway at PATH to remove obstacles to this basic standard of care. But the strength of powerful organizations and great minds is lost if that’s where we lean back and call it a good day’s work.

If it were enough, the more than 80,000 premature babies – an estimated 20 percent of preterm births that are due to preeclampsia – and hundreds of deceased mothers in the US, where medical shelves are fully stocked with this treatment, would not trouble us.

As I leave Geneva, I’m left with a feeling of optimism and impatience. I would submit that the international maternal-newborn health community would do well do adopt a similar two-pronged mission to preeclampsia and its effects on women and babies: universal access to what we know today – and thus realize improvements to our unacceptable mortality rates - with a parallel mission to create a better solution for tomorrow, recognizing that every life matters.

 
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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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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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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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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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Posted on in Preeclampsia Information

Safety and Efficacy—These are the Questions

BY JASON G. UMANS, MD, PHD

It’s time to resolve the lack of knowledge about optimal use of medications in pregnancy.

Despite advances in drug research and policies surrounding clinical trials, we still don’t know about the safety of most drugs or the full risks of untreated disease to both the mother and fetus (unborn baby). Indeed, most women and their physicians would be disappointed by how little we really know about the optimal use of medications during pregnancy.

Prior to 1993, pregnant women (or women who might conceive) were specifically not included in drug clinical trials. Thus, most of the safety data for prescribing drugs during pregnancy are either extrapolated from animal data (which can either underestimate or overestimate risk in pregnant women and their unborn babies) or from limited, often uncontrolled reports of “off-label” drug use (use for purposes other than the intended treatment) or adverse outcomes during pregnancy.

The optimal dose of a drug used during pregnancy should maximize therapeutic benefit while minimizing the risk of damage or toxicity to the mother, fetus, and placenta. Obviously, too high a dose could cause toxic effects, out of proportion to therapeutic benefits. Less obviously, too low a dose may deny women any benefits of treatment, while still exposing them to some risk.

Determining the best dose is difficult because a woman’s ability to metabolize and excrete drugs, as well as her body’s response to drugs, changes dramatically over the course of her pregnancy. A case in point is that most drugs are eliminated from the body either by enzymes in the liver or by excretion into the urine, and the activity of both of these processes can be increased by up to 50% in most pregnant women. This fact is rarely taken into account.

It is a basic principle of pharmacology that, when we weigh potential harms of a drug treatment, we should do so at a dose and dosing interval that maximizes potential benefit. Unfortunately, we lack this sort of dosing information for almost all drugs prescribed to pregnant women.

Most women will require one or more prescription drugs during pregnancy despite the fact that almost no commonly used drugs have been tested specifically for their use in pregnancy. Consequently, while we always have some information about fetal safety (more often in animals than in humans), we know almost nothing about maternal safety, about choosing the right dose for a pregnant woman, or about how effective the drug will be during pregnancy.

My colleagues and I continue to be amazed that in the 21st century, in most cases, physicians have to use their best judgment to weigh risks and benefits, even though they rarely know the optimal dose of a drug that should be prescribed to their pregnant patient or the full risks of untreated disease.

A Call for Well Designed Research and Clinical Trials

It is the job of clinical trials to determine safety and efficacy, including proper dose response. Men comprise the largest proportion of subjects studied in most drug research. In most cases where there are data, research has shown that different (and, surprisingly, often higher) drug doses are required to achieve the desired drug effects in pregnant women in comparison to non-pregnant women or men. We ask, “Is the choice of not treating a woman during pregnancy better than dealing with the challenges that accompany finding the best treatments?” Surely, “yes” cannot be our answer for this would deny women the potential benefit of newer and, perhaps, safer and more effective drugs than are used currently for underlying maternal illnesses. Furthermore, we need to accelerate the development of sorely needed drugs to prevent or treat disorders unique to pregnancy such as preeclampsia, preterm birth and fetal growth restriction.

A Call for Overdue Reclassification of Drugs, Based on Accurate Risk and Clinical Considerations

Current medication labeling with respect to pregnancy is dictated by law and regulated by the US Food and Drug Administration (FDA). This labeling typically reports only on fetal safety issues with respect to the use of the medication and provides no information on changes in drug dosing or effectiveness during pregnancy. For decades, the FDA has used a system of letter categories to classify drug risks to the fetus, focusing overwhelmingly on evidence of birth defect risk, without consideration of the risks of untreated or undertreated disease and of appropriately tailored drug use in pregnancy.

US Food and Drug Administration (FDA) Drug Risk Classifications System for Pregnant Women

Category

Definition

A

Adequate and well-controlled human studies have failed to demonstrate a risk to the fetus in the first trimester of pregnancy (and there is no evidence of risk in later trimesters).

B

Animal reproduction studies have failed to demonstrate a risk to the fetus and there are no adequate and well-controlled studies in pregnant women OR Animal studies have shown an adverse effect, but adequate and well-controlled studies in pregnant women have failed to demonstrate a risk to the fetus in any trimester.

C

Animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.

D

There is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience or studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.

X

Studies in animals or humans have demonstrated fetal abnormalities and/or there is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience, and the risks involved in use of the drug in pregnant women clearly outweigh potential benefits.

The FDA system differs from grading systems in other countries by depending more heavily on animal data when human data are limited and having fewer, broader, and less specific categories. Most drugs used in pregnant women fall in FDA category C. This is anything but reassuring, as the drugs in category C have not undergone adequate and well-controlled studies in humans and have been correlated with adverse effects on the fetus in animal studies.

Several category D and X drugs are also used in pregnant women. For example, aspirin, a category D drug, is commonly used. There are cases in which category D drugs are apparently safe and crucial to the health of pregnant women and their fetuses, such as drugs used to prevent rejection of transplanted organs, despite these drugs being placed in a category defined by studies indicating risk of fetal abnormalities in humans.

An additional quirk of the FDA classification system is that drugs without proven indications in pregnancy will be classified as category X, by default, even without clear evidence of fetal risk, since they are considered to be “without benefit” and therefore must have an unacceptable risk/benefit ratio. By contrast, the “X” category in either the European or Australian fetal drug risk classification systems is reserved for drugs that have such a high risk of permanent harm to the fetus that they should absolutely not be used. This issue is important for the current classification of all statin drugs (which are classified as D, rather than X by the Australian regulators), as these have not been considered previously to have any indications for their use during pregnancy.

There are several interesting examples how research can change everything. One of the major problems with assessing fetal risk is that birth defects occur in approximately 3% of all healthy pregnancies, so we would still observe birth defects (and might suspect fetal dangers) in 3% of women who take even a perfectly-safe drug during pregnancy. Indeed, a classic example relates to the drug BendectinTM—a combination of pyridoxine and doxylamine, which was widely prescribed for “morning sickness” in the 1960s and 1970s. It was removed from the market after a flood of lawsuits blaming it for causing birth defects (without any controlled studies). It was then subjected to perhaps the largest series of studies of drug safety in pregnancy, proving its safety beyond any doubt, leading to the dismissal of all of the lawsuits, and to its classification in category A. This is why controlled studies are so important. By contrast, ACE inhibitors, a class of antihypertensive agents, were originally classified as FDA category C. The classification was only changed to D years after many reports of toxic effects on the fetal kidneys in the latter part of pregnancy. Finally, perhaps surprisingly, among the best and most thoroughly studied of all drugs in pregnancy are those for the treatment of HIV infection, many of which are now classified in category B, and used to effectively prevent the transmission of HIV from mother to fetus. We are fortunate, in a sense that everyone agreed the stakes were so high that the study of these drugs was necessary in pregnant women, rather than leaving physicians and their patients to guess at safety and the right doses to use during pregnancy.

The FDA has long recognized the current system requires a major overhaul to be more informative and useful to clinicians and patients. Over five years ago, major changes to both the pregnancy and lactation subsections of drug labels were proposed to include a narrative summary of risks, clinical considerations to support patient care decisions and counseling, and a data section with more detailed information. The proposed regulations would eliminate the current prgnancy categories A, B, C, D and X in favor of categories that more accurately and consistently convey risk and benefit. Unfortunately, we are still in limbo between the phase-out of the old letter categories, which appear in all textbooks and review articles, and the new, more informative approach, which is yet to be implemented.

(See http://www.fda.gov/Drugs/DevelopmentApprovalProcess/DevelopmentResources/Labeling/ucm093307.htm)

Jason G. Umans, MD, PhD, is Scientific Director of the Biomarker, Biochemistry, and Biorepository Core Laboratory at MedStar Health Research Institute, Director of Research Education and Training for the Georgetown-Howard Universities Center for Clinical and Translational Science, and serves as Associate Professor of both Medicine and of Obstetrics and Gynecology at Georgetown University. Dr. Umans, an internist, nephrologist, and clinical pharmacologist is also an American Society of Hypertension (ASH) Specialist in clinical hypertension who has devoted most of his efforts over the past two decades to the care of medically-complex pregnant women and to research focused on preeclampsia and on drug therapy in pregnancy. He received his MD and PhD in Pharmacology from Cornell University, and completed clinical training in Medicine and Nephrology at the University of Chicago. Prior to joining MedStar, he held faculty appointments at Cornell, Chicago, and Georgetown. He is internationally recognized as an expert in medical disorders during pregnancy, particularly hypertension and kidney disease. His research in clinical pharmacology focuses on pharmacokinetic and pharmacodynamic studies in pregnant women. Additional research interests include vascular mechanisms and risk factors for hypertension, kidney, and cardiovascular disease. He has published approximately 150 original papers on obstetric-fetal pharmacology, preeclampsia, pharmacokinetic modeling, drug assay development, neuropharmacology, vascular and renal physiology, inflammatory mechanisms, and cardiovascular and metabolic diseases. He has written book chapters and review articles, and has spoken widely on hypertension and renal disease in pregnancy, and on pharmacotherapy in pregnancy and renal failure.

 
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BY DR. JASON G. UMANS, MD, PHD

Here is an update on studies underway.

Pravastatin, a “statin” drug (known scientifically as an HMG-CoA reductase inhibitor) inhibits a key early step required for cholesterol synthesis in the liver and is used widely for prevention of coronary artery disease. Somewhat surprisingly, it is now the subject of two clinical studies (one in the US and one in the UK) to find out whether it might be safe and useful to prevent or treat severe or early-onset preeclampsia.

Animal studies in different rat and mouse animal models, which mimic many of the key characteristics of preeclampsia, have shown that pravastatin improves several of the biochemical measures associated with severe preeclampsia in women. It also seems to improve blood pressure and fetal growth.[1-7] It is impossible to predict whether these exciting results in mice and rats will translate to either prevention or treatment of preeclampsia in women without well-designed and carefully conducted clinical studies in pregnant women.

Research is now underway that seeks to answer questions on two parallel tracks. The first addresses the question of whether pravastatin improves the health of women who already have severe disease and thus may allow their pregnancies to continue. The second will determine the proper dose to use in a study to determine whether pravastatin can prevent preeclampsia from occurring in the first place.

More specifically, the first study, underway in the UK, aims to determine whether pravastatin improves biochemical markers of preeclampsia (the same ones which are improved in the animal studies) in women who already have early-onset severe disease. The British study is titled “StAmP [Statins to ameliorate early-onset preeclampsia]” (www.controlled-trials.com ISRCTN23410175). The US study, to determine the proper dose of pravastatin in order to design a subsequent preeclampsia prevention study, is titled “Pravastatin for prevention of preeclampsia” (www.ClinicalTrials.gov NCT01717586).

Why are these studies just now taking place?

When statins were originally marketed in the 1980s, they were designated pregnancy category X by the FDA because there was no known benefit at the time to outweigh any potential risk and because there was theoretical potential for teratogenicity (malformation of the embryo). By definition, FDA category X signifies that studies in animals or humans have demonstrated fetal abnormalities or there is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience, and the risks involved in use of the drug in pregnant women clearly outweigh potential benefits.

Because cholesterol is a component of cell membranes, inhibition of its synthesis could potentially interfere with embryonic or fetal development for teratogenicity. Early reviews of early pregnancy statin exposures reported spontaneously, mostly to the FDA, included approximately 70 well-documented cases with 22 structural birth defects, some severe and in worrisome patterns.[8,9] While quite concerning, it is difficult to assess the actual level of risk without comparison to a control group of women not exposed to statins. Further, none of these abnormalities in these reports occurred following pravastatin. A separate, similarly uncontrolled series of 134 cases of inadvertent early pregnancy lovastatin and simvastatin exposures reported to the manufacturer showed no excess of either poor pregnancy outcome or birth defects; of note, both of these drugs cross the placenta more so than pravastatin.[10] Despite this, the X categorization for pravastatin was not questioned or adequately investigated until now because there was no known reason to use statins in pregnancy.

Several studies in the last decade have attempted to detect an increased risk of birth defects that might be related to statin drug use in early pregnancy.[8-13] Three studies examined rates and types of birth defects in a total of 377 women who had taken these drugs during the first trimester.[11,12,14] Across these studies, there was no higher incidence or specific pattern of birth defects. Using a different approach, researchers reviewed the pattern of abnormalities in all 22 cases with statin exposures that were included in two very large birth defects databases; there was no evidence to link statin exposure with any pattern of birth defects, specifically failing to confirm the sorts of birth defects suspected from the original reports to the FDA.[13] Despite their limited size, when taken together, the findings from these studies support the lack of teratogenicity of statins in general and pravastatin in particular. This latter more significant lack of teratogenicity may be due to pravastatin’s relatively low potency, rapid elimination by the mother, and its limited ability to cross the placenta (from mother to fetus).[15] Whether these encouraging conclusions following early or brief exposures would hold up with widespread use or with more extended exposure over the course of pregnancy is uncertain.

Where we are today

As of today, the available human and animal data do not support pravastatin being a teratogen, that is an agent that would cause malformation of the embryo, despite its current FDA classification within the X group category. Compelling animal data suggest that it might have benefit for the prevention or treatment of severe or early-onset preeclampsia, a condition for which we have no proven, effective therapies. Despite the many unknowns, it is unlikely that we will be able to evaluate either the benefits or risks of this potential treatment without well designed clinical research in pregnant women, conducted under carefully-controlled conditions by skilled clinical-investigators. The first of these opportunities is now at hand.

1. Costantine M, Tamayo E, Bytautiene E, et al. Using pravastatin to improve the vascular reactivity in a mouse model of soluble Fms-like tyrosine kinase-1-induced preeclampsia. Obstet Gynecol 2010;116:114–20.

2. Fox KA, Longo M, Tamayo E, et al. Effects of pravastatin on mediators of vascular function in a mouse model of soluble Fms-like tyrosine kinase-1–induced preeclampsia. Am J Obstet Gynecol 2011;205:366.e1–5.

3. Ahmed A, Singh J, Khan Y, Seshan SV, Girardi G. A new mouse model to explore therapies for preeclampsia. PLoS One 2010;5:e13663.

4. Singh J, Ahmed A, Girardi G. Role of complement component C1q in the onset of preeclampsia in mice. Hypertension 2011;58:716–24.

5. Kumasawa K, Ikawa M, Kidoya H, et al. Pravastatin induces placental growth factor and ameliorates preeclampsia in a mouse model. PNAS 2011;108:1451–5.

6. Bauer AJ, Banek CT, Needham K, Gillham H, Capoccia S, Regal JF, Gilbert JS. Pravastatin attenuates hypertension, oxidative stress, and angiogenic imbalance in rat model of placental ischemia-induced hypertension. Hypertension. 2013;61:1103-10.

7. Saad AF, Kechichian T, Yin H, Sbrana E, Longo M, Wen M, Tamayo E, Hankins GD,Saade GR, Costantine MM. Effects of Pravastatin on Angiogenic and Placental Hypoxic Imbalance in a Mouse Model of Preeclampsia. Reprod Sci. 2013 Jun 7. [Epub ahead of print].

8. Kazmin A, Garcia-Bournissen F, Koren G. Risk of statin use during pregnancy: a systematic review. J Obstet Gynaecol Can 2007;29:906.

9. Edison R, Muenke M. Mechanistic and epidemiologic considerations in the evaluation of adverse birth outcomes following gestational exposure to statins. Am J Med Gen 2004;131A:287.

10. Manson JM, Freyssinges C, Ducrocq MB, Stephenson WP. Postmarketing surveillance of lovastatin and simvastatin exposure during pregnancy. Reprod Toxicol. 1996 Nov-Dec;10(6):439-46. PubMed PMID: 8946557.

11. Ofori B, Rey E, Berard A. Risk of congenital anomalies in pregnant users of statin drugs. Br J Clin Pharmacol 2007;64:496.

12. Taguchi N, Rubin ET, Hosokawa A, Choi J, Ying AY, Moretti ME, Koren G, Ito S. Prenatal exposure to HMG-CoA reductase inhibitor: effects on fetal and neonatal outcomes. Reprod Toxicol 2008;26:175.

13. Petersen EE, Mitchell AA, Carey JC, Werler MM, Louik C, Rasmussen SA, et al. Maternal exposure to statins and risk for birth defects. Am J Med Genet A 2008;146A:2701–5.

14. Winterfeld U, Alligno A, Panchaud A, et al. Pregnancy outcome following maternal exposure to statins: a multicentre prospective study. Br J Obstet Gynaecol 2013;120:463-71.

15. Zarek J, Degorter MK, Lubetsky A, Kim RB, Laskin CA, Berger H, Koren G. The transfer of pravastatin in the dually perfused human placenta. Placenta. 2013;34:719-21.

 
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Adelaide C. Ward Women's Heart Health Center at University of Kansas Hospital is making a difference!

Left to Right in Photo: Karin Morgan, Program Coordinator for Hospital City; Sonya Parashar, Research Assistant; and Dr. Ashley Simmons, Medical Director of the Adelaide C. Ward Women's Heart Health Center at the University of Kansas Hospital shared with us this news.

The Preeclampsia Foundation's brochures have been fundamental in our quest to better serve our patients at the Adelaide C. Ward Women's Heart Health Center at the University of Kansas Hospital. Recently, we have started a preeclampsia and heart disease service that seeks to better educate preeclampsia patients about their increased risk of developing heart disease and stroke. Using the Foundation's preeclampsia and heart disease brochures, we are able to not only reach out to many women during their hospital stay but also to send them home with a reminder. Additionally, we are making a concentrated effort to screen Spanish-speaking women using translated materials.

Ultimately, our goal is to not only educate women about their risk but also help them make positive lifestyle changes. Our clinic offers a 90-minute personalized heart health risk assessment, which evaluates each patient's risk. During the assessment, our cardiac nurse practitioner uses each patient's results to make customized recommendations to help lower her risk in the future. Using the Preeclampsia Foundation brochures, our clinic has been able to seek out a higher risk population, educate them, and potentially help them reduce their risk in the future. These brochures have been a great tool and asset to us, and more importantly, to our patients.

 
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Last month, we posted a lengthy article titled Screening Tests for Preeclampsia. On August 14, a press release from PerkinElmer announced the launch of its new screening test for early onset preeclampsia, Preeclampsia Screen™ | T1. This month we posed questions to PerkinElmer Labs/NTD. These are the answers we received to five of the questions, which are representative of the questions you asked us.

How much will the screening test cost?

The list price of the test is $495. This will be billed to a patient's insurance, if available. If the test is not covered by a patient's insurance and the patient takes advantage of applicable payment options, they can expect to spend approximately $200 out of pocket for the test.

Will my insurance cover it?

This is uncertain, at this time, as the screening test just launched on August 1, 2013. It is our plan to submit to insurances and work with them on reimbursement for these new claims.

Will it be available everywhere in the U.S., and can any doctor or midwife order it for me?

It must be ordered by a qualified health care provider who is able to order laboratory tests and who has set up an account with PerkinElmer Labs/NTD. It is available to all qualified healthcare providers in the country.

Is it available outside the US?

Yes. Samples can be received at PerkinElmer Labs/NTD from outside the U.S., as long as they conform to all sample and shipping requirements, including any international regulations.

Will the screening test tell me when I might start getting sick, if I'm going to get PE?

The test will not tell you or your healthcare provider when you may begin having symptoms of preeclampsia. What it can tell your healthcare provider is whether or not you are at increased risk of developing early onset preeclampsia, which is preeclampsia that results in the delivery of the fetus before 34 weeks gestation.

 
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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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The Preeclampsia Registry

The launch of The Preeclampsia Registry™ is off to a great start. Three hundred individuals have entered information that will help generate hypotheses and test ideas. Investigators are already planning research studies that will use this unique data set. Nowhere is it more true than in a disease registry that every person makes a difference. We look forward to more of you sharing your pregnancy history and longer term health information.

On another note... It's been a while in coming but we are excited this week about the November publication of a patient study initiated and funded by The Preeclampsia Foundation in 2008 and with data analyzed in 2011. The paper, "Prenatal education is an opportunity for improved outcomes in hypertensive disorders of pregnancy: results from an Internet-based survey," was published in the November issue of the Journal of Maternal Fetal Neonatal Medicine. Its authors are the Foundation's Executive Director, Eleni Z. Tsigas, and three preeclampsia researchers: Dr. Anne B. Wallis, Dr. Audrey F. Saftlas, and Dr. Baha M. Sibai.Their paper reports on our 2008 survey of 754 women who visited the Preeclampsia Foundation website, in which we found that most received prenatal checkups and regular screenings, but only 42% "definitely" recalled specific education about preeclampsia and only half "fully understood" the explanation. However, 27 of the 169 women (75.0%) who understood acted on this knowledge by promptly reporting symptoms and complying with treatment. Of the 46 who did not remember some or any of the education, only 3 (6.0%) took any action. The difference between these two groups is highly significant. The authors conclude that knowledge enables women to spot signs and symptoms, leading to earlier diagnosis and management, and reduced morbidity and mortality. They propose the adoption of formal guidelines on preeclampsia education.

Note: Survey studies like this one can be accelerated through our registry of preeclampsia survivors, as they will be invited to participate in future surveys.

Feedback from last month's Expectations newsletter indicated your enthusiasm to support research. The Boston Promise Walk Facebook page proclaimed "The dollars we raise here in Boston go to supporting research initiatives like those highlighted in the PF's Expectations newsletter this month. Did you know that there is major preeclampsia research right here in numerous institutions and corporations in our own community? Really cool stuff."

 
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The ACOG News reported that as a result of the US Affordable Care Act, in 2014 and thereafter:

  • An estimated 8.7 million American women currently purchasing individual insurance will gain coverage for maternity services.
  • Insurance companies in the individual and small group markets will no longer be permitted to charge higher rates due to gender or health status.

The new law establishes a series of new benefits and protections, some of which are particularly important for women and children. BabyCenter.com provides an easy-to-understand and full report on how the Affordable Care Act affects pregnant women and their families. We're curious...how do you think it will affect you or other women with complicated pregnancies? Share with us at info@preeclampsia.org.

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When Jaime Nolan lost her premature baby, Grace Ann, she was determined not to let the meaning of her life end there.

Born at 27 weeks after Jaime’s sudden onset of severe preeclampsia, Grace only survived eight days while her mother fought for her life in the intensive care unit. When Grace went into cardiac arrest, Joe Nolan watched the doctor standing over his daughter’s incubator, performing chest compressions with his thumb.
Jaime discovered the Preeclampsia Foundation online and found a network of support that helped her work through her grief. Determined to take action and help prevent others from enduring such a painful loss, she found out the Foundation needed to develop an annual fundraiser.

Jaime gathered a local group of volunteers and chaired what she thought would be a one-time gala in Minneapolis. At the same time she was helping with the first national walk-a-thon, which was expected to become the Foundation’s annual fundraiser.

The Saving Grace gala was held in November 2005 and the moving event raised more than $57,000. The Nolans were asked if the Foundation could make the gala an annual event and they were honored that Saving Grace— A Night of Hope has since become the signature event.

Each year Saving Grace rotates among major cities in North America, increasing national awareness of the disorder and taking advantage of the unique relationships and synergy of each city, said Eleni Tsigas, Executive Director of the Preeclampsia Foundation. She served as chair of the 2008 gala in Washington, D.C., which was selected to coincide with the annual meeting of the World Congress of the International Society for the Study of Hypertension in Pregnancy (ISSHP) and to increase awareness among legislators.

“It connected us to an international agenda,” Tsigas said. “And it gave us an opportunity to reach out to Capitol Hill and begin advocacy and public policy efforts.”

With each gala, one constant is the telling of stories— powerful stories that put a face on preeclampsia through video stories accompanied by verses of “Amazing Grace.” The stories connect the guests: whether they are survivors and their families, researchers, members of the medical community or someone with no previous experience with the pregnancy disorder.

“The combination of all these people who care or are learning to care leads to a very inspiring evening,” Tsigas said.

When Jill Siegel coordinated the 2009 event in Chicago, she was worried about raising money in a shattered economy. There were gaps in sponsorships and donations. She asked survivors to write their stories and ask for donations of support so they could be included in a special commemorative program, an effort that netted nearly $7,500.

“It is so important we tell our stories,” said Siegel, director of communications for the Foundation. “Statistics may be hard to remember but you won’t forget the stories and if you remember them, you can share them with others and if you share them with others you can save lives. That’s one of the key roles Saving Grace plays.”

Sometimes, those stories are caught in unforgettable moments. Lauren Larsen was chairing the 2006 gala in San Francisco when her 5-year-old daughter, Clare, walked up to Tsigas with a month’s worth of her “giving money,” pressing four $1 bills into her hand.

“I thought I’d cry on the spot,” Larsen said.

When Larsen was asked to chair the gala, she didn’t feel prepared for the role but a bold move allowed her to double the previous year’s sponsorships. The motivational speaker gave talks for Johnson & Johnson and decided to e-mail the chairman and CEO, asking if he’d like to co-chair. The subject line read “Please say yes.” William Weldon agreed and his company became the lead sponsor, bringing in $265,000.

“The night just came together and it was just amazing, people laughing, people crying, people having their hearts touched,” she said.

Jaime Nolan coordinated the gala again in 2007 with co-chair Leslie Weeks. It was held in Boston, in a small room that forced an intimacy unusual among charity galas. The keynote address and Siegel’s personal story of survival were not delivered like rehearsed speeches but more like living room conversations.

“It felt as if they were personally connected with each person there,” Weeks said.

Maybe that’s what led to a moment that still gives Tsigas chills. During the auction there was a paddle drive and as it was nearing to a close, a man stood up and asked what the total was. It was quickly calculated at about $20,000. He challenged the guests to reach $30,000 and he would match it. Paddles were flying and the goal was reached within minutes.

“I was flying around the room, with tears in my eyes, trying to get bid numbers,” Tsigas recalled.


And Nolan remembers the tears too, from when she was standing at the podium, thinking about her daughter’s legacy, a legacy that has led to more than $800,000 to support the work of the Preeclampsia Foundation.

“While I know that the event is not about Grace herself, it was through her that the event was created and has been able to touch so many,” she said.

 

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At the recent Saving Grace – A Night of Hope event in Seattle, Washington, many individuals graciously purchased auction items or made personal donations. Many guests also provided us with their employer’s Matching Donor Forms. It is impressive that some of our donors had already researched their employers’ policies and had discovered this golden opportunity – the Employer Matching Gift Program.

An Employer Matching Gift Program is one where an employer matches an employee’s charitable donation, usually dollar for dollar. Some companies call this a Cash Grants Program or a Matching Grants Program. These Gift Programs can quickly multiply the impact of one employee’s donation, often quite substantially. In some cases an employer may even match up to 2 or 3 times that of the employee’s donation. But even a 1:1 match is incredibly impacting. Along with matching monetary donations, some employers even have programs wherein the company will match qualified volunteer hours with an assigned cash amount.

It is the responsibility of employees to get the “Matching Gift” process started with their employers. Some employers provide their Company Match Program guidelines online, or will supply the information through the Human Resources office. There are even companies out there that will match donations of retirees or employee spouses. An added pleasant surprise is that most employers make this process relatively simple, and usually request minimal documentation (normally only requiring an official donation receipt as well as completion of a quick online form or a one-page matching gift form).

Most employers have stipulations in place regarding minimum or maximum annual donation amounts, and may have other specific requirements, as well. It is the company’s choice as to how the Matching Gift Program is constructed. But any amount of matching gift will make a positive impact on a non-profit foundation.

What are your employer’s policies? Investigate your company! Ask your friends and family members to research their employers’ giving program policies as well!

In next month’s newsletter, we’ll continue sharing information about another avenue that can be used to receive employers’ donations – Philanthropic Grant Programs.

 

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Posted on in Raising Awareness and Fundraising

Lauren Larsen thought she had a wonderful life: loving marriage, good friends, successful career and her first child on the way. Shortly after entering the ninth month of her pregnancy, Lauren's life took a perilous turn due to the rapid onset of preeclampsia. After more than a month in intensive care and years of recovery work ahead of her, Lauren emerged from her trials with the desire to build a life full of purpose and meaning. Zuzu's Petals: A True Story of Second Chances is Lauren's real-life memoir of her personal battle with preeclampsia and her drive to make her "second chance at life" count for more than the average person.

2010 Saving Grace co-chair Autumn Spear described Zuzu's Petals as one of the best books she has ever read. "Obviously I have a personal connection to the book having shared severe preeclampsia, but it's also just a great story and written with humor and grace... Many time I found myself saying aloud 'Ah ha! See, that did happen, I knew it!' To have a book that so thoughtfully details such a tragic experience is a blessing and gift."

Lauren's book gives voice to the countless number of women who have survived preeclampsia and were left wondering, "Why did this happen to me?" Her dry humor and stark honesty permeate the story, letting the reader feel that they are experiencing each increasingly devastating moment of her experience. By the end, the reader triumphs with Lauren as she not only conquers the effects of her hospitalization, but chooses to make her existence count.

One of the most generous aspects of Zuzu's Petals is that each purchase from Lauren's website can be designated to benefit preeclampsia research. To purchase a copy and enjoy an excellent, if not grimly realistic, story, please visit Lauren's website and select "preeclampsia research" for a portion of your purchase to benefit the Preeclampsia Foundation. You can also find more information about the book in the Preeclampsia Foundation marketplace.

 

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The Promise Walk for Preeclampsia has made leaps and bounds in pinning the map with walk locations, recruiting volunteers and raising awareness since it was established in 2005. Today tens of thousands of people and businesses are exposed to the imagery and messaging of the Promise Walks. Media coverage, banners, flyers and posters will deliver the message to almost two dozen cities this year.

The Foundation seeks national sponsors that share a passion and commitment to women and their families: a sponsorship which affords businesses and organizations the opportunity to align themselves with an vital health cause that impacts mothers, babies and young families. Who could argue with the PR value and marketing potential of this demographic?

The immediate benefit to a sponsor includes advertising on 10,000 shirts, media coverage, verbal and printed recognition at all our events, and more. See our sponsorship benefits for details, or contact Sponsor Coordinator Jamie Schmidt to create a custom package for your business.

Ultimately, support from sponsors allows the Preeclampsia Foundation to take crucial strides toward saving mothers and babies during the most important time in their lives. Do you or somebody you know have the passion to make this kind of impact as a Promise Walk sponsor?

 
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Over 500,000 infants are lost worldwide as a result of their mothers having a hypertensive disorder of pregnancy. Artist Susannah Pabot, a two-time preeclampsia survivor, has decided to transform some of the continued sadness and sense of helplessness she shares with so many other survivors into a creative project: a written word and public art installment to commemorate the loss of life due to preeclampsia and raise awareness of the disease within the wider public.


Her planned project is to install a sea of fifty small, simply-designed, identical cradles on a grassy area, each commemorating a particular infant lost to preeclampsia or HELLP. The cradles will stand empty of babies, but they will not be empty of words: of love, longing and memories. When the viewer steps closer, s/he will find inside each cradle words commemorating the brief life of a lost infant, words shared by families with the artist and woven into a creative text.

The installation will be exhibited in Providence, RI, later this year. Susannah is also currently fund-raising to take the exhibit to other locations within the US.

Families who would like to dedicate a cradle to their baby by sharing existing written texts, web pages and/or by responding to a brief questionnaire should email Susannah directly at susannah_pabot@brown.edu.

 
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Have you ever been standing in the checkout line and had the urge to tell the pregnant woman in front of you about preeclampsia, but felt unsure what to do? If you follow these three easy steps, you just might be able to help save a life!

Initially, approach the conversation with a flattering question, "Congratulations, when are you due?" then lead in with "Is this your first baby?" Most women love to dote on the impending arrival of their baby. Humor is also a great approach. For example, "You look incredible! When I was in my last trimester I was so swollen from preeclampsia, I couldn't see my own feet." Little conversational volleys get the dialogue flowing in a comfortable direction.

The second step is to segue into your story. When you share a snippet of your life or pregnancy experience, it can provide a perfect opportunity to explain preeclampsia. Newsletter Writer Laura Dale transitions into her story by saying, "I have a healthy 3 year old son. He's our miracle baby, born premature as a result of being induced early due to preeclampsia," and says she has never had a mom walk away at this point in the exchange. This is the hook, line, and sinker portion of the conversation.

Many times, women will say, "What is preeclampsia, I have never heard of it?" or "My doctor mentioned preeclampsia; I didn't realize it was so dangerous?" This is your golden opportunity to begin step three of the conversation: share the information, facts and direct them to the Preeclampsia Foundation website for additional help. By sharing this valuable information you are making a Promise for Tomorrow - a promise that there will be a tomorrow for these moms and babies.

 
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As many Promise Walk participants know, raising money early in the year can be quite difficult, particularly coming out of the post-holiday slums. Nevertheless, two Promise Walk for Preeclampsia volunteers did not let any excuse stop them from raising the highest funds for an individual and team. Janel Kovarik, the leader of the Chicago “Down with BP” team, raised $750 toward her personal goal of $1000, while Samantha Reyes and her team “Scuderia Reyes” of San Diego have raised an amazing $1,240 to date.

How did these two amazing volunteers do it? Janel, a two-time survivor of severe preeclampsia, explained that for her, it was all about networking with different circle of friends and telling people her story.

“Tell people your story- Tell them! Ignorance is bliss,” Janel explained. Her advice to other teams? Incorporate a cathartic way of telling your story to your friends that emphasizes your personal connection to the condition and your desire to prevent more women from going through preeclampsia.

Samantha, a HELLP syndrome survivor, agreed, emphasizing the importance of supportive friends and family and the presence of her employer’s corporate matching program to her fundraising success. “The ultimate goal is to find a cure. Every dollar makes a difference and brings us closer to ensuring that other families won’t have to experience preeclampsia.”

Janel’s responses:

1. Why do you walk and raise money for the Preeclampsia Foundation? I am walking and raising money for the Preeclampsia Foundation because I am an avid runner (in Chicago, I am a part of the PF team organizing the walk and now 5K!) but more importantly, I am a survivor. I had severe preeclampsia and severe hypertension with both of my children's pregnancies.

2. To what do you attribute your success in raising so much money for the PF? I believe Facebook has helped quite a bit actually! In addition to Facebook, I am a part of a lot of groups within my different circles of friends. Examples: my book club friends, my Ladies Lunch Club friends, former work colleagues and I sent my messages through my personal family blog. I also am organizing a stationary party in which all the proceeds go to the Foundation. I incorporated a cathartic way of telling my story to my friends that HOPEFULLY leads to helping more women that are going through what I went through, as well.

3. What advice would you give other teams and walkers to help them raise funds? Tell people your story. Tell them! Ignorance is bliss and people do not know much about certain medical conditions, so telling your story, openly, helps people, especially those close to you, know what preeclampsia is. It touches them and shows that pregnancy is not all 'normal and perfect and easy', like most of the world would like to think. I cannot tell you how many emails I received in response to my personal email (telling my story) that said, "Janel, I had no idea what you and your son went through. I am sorry."

4. What do you hope funds raised for the PF will go toward? I pray that the funds go towards research for a cure and cause. I also hope doctors can become more educated on the condition, as well.

Samantha’s Responses:

1. Why do you walk and raise money for the Preeclampsia Foundation? My twins and I almost lost our lives to HELLP Syndrome. My family and I are grateful for the excellent care we received from UCLA. We often think about other people who don’t have access to the same excellent care. Our hope is that through this Foundation, people and healthcare providers will have available to them the information needed to diagnose preeclampsia and HELLP early enough for treatment. Perhaps even some day, the cause and cure will be discovered.

2. To what do you attribute your success in raising so much money for the PF? We have great friends and family who are always there for us. It’s easy when so many people care and genuinely want to help. Also, my company matches donations from their employees.

3. What advice would you give other teams and walkers to help them raise funds? This is a scary life-threatening disorder and some people are not as lucky as we are. However, it’s important to stress the hope that this foundation provides. The ultimate goal is to find a cure; every dollar makes a difference and brings us closer to ensuring that other families won’t have to experience preeclampsia.

4. What do you hope funds raised for the PF will go toward? Research to someday find the cause and cure for pre-eclampsia.

 

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The countdown to The Promise Walk for Preeclampsia continues with teams and individuals scrambling to secure the most donations. This month we celebrate our top three teams: Scuderia Reyes (San Diego),
Cooper Landon Barnett (San Jose), and Team "Down with BP" (Chicago), all with over $1,000 raised so far!

The top three individuals are giving the teams some stiff competition. Lisa Bloch (San Jose) has already brought in over $1,000 and Sarah Scott (Raleigh) and Stephan Pollitt (San Jose) are already over $500. With a little over a month to go for some of the walks, turn on the heat!

When you register for a Promise Walk and raise funds as an individual or as a team, you are rewarded for your efforts with a Promise Walk ribbon magnet, key chain or hat as you reach certain fundraising levels, but those rewards can turn into much more "rewarding" prizes when they help you initiate a conversation about the Promise Walk and the Preeclampsia Foundation. Each one of the awareness-raising items encourages questions from people you meet, opens the door to share your personal story or why you are committed to this important cause, and lets other survivors and supporters know that there is an organization changing the lives of mothers and their babies and catalyzing research to find the cause and cure.

Director of Operations Angela Little explained, "These are much more than key chains - they are a physical, tangible reminder of our promises to ourselves, to our families, loved ones, and to our communities around us. The Promise Star key chains themselves will have the words "Promise Walk" stamped in them, but the purpose of the star is much more than just something to hang on a key chain - it is a symbol of a promise."

Fundraising for the Promise Walk is easy with personal fundraising pages and social media links on the website, as well as a downloadable donation form if you prefer face-to-face fundraising.

 
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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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