I found the Preeclampsia Foundation website in January 2003 when I was pregnant with my second child – and terrified of what might happen. That second trimester panic so many of our members know all too well.

I’ve been a volunteer ever since. Anne Garrett was my savior, and by the time my daughter Camille was born, I was a devotee for life. I thought Anne’s vision and leadership were amazing, and I wanted to help her and the Preeclampsia Foundation in any way I could. I’d have washed her windows if she’d asked me.

When I had severe preeclampsia during my first pregnancy in 1998, there was no one there. No one to help me pick up and keep going after that freight train hit. But the Preeclampsia Foundation is that ‘someone’, or rather many ‘someones’, dedicated to raising awareness and funding research. Most of all, the Preeclampsia Foundation is here providing support for women and families who need someone to turn to after preeclampsia turns their lives upside down.

The Foundation has grown exponentially since I discovered it – an amazing achievement considering it has all happened through the dedication of our volunteers. There’s so much that we can be proud of. I was thrilled when the Foundation got the Gates grant for the International Preeclampsia Summit in 2004. And I’m tickled every time I get a Google Alert in my inbox telling me that somewhere we’ve been quoted as an authority.

I’ve been honored to accept a position on the Board of Directors, to begin in January 2007. I’m humbled almost beyond words. We’re blessed to have the team that we have working on this. Not only are they a pleasure to work with, they’re also quite brilliant. In the next year, we’re hoping to develop a comprehensive support plan with specific protocol for what we offer members at different stages of their life: people thinking of trying to conceive, after a loss, in later life after childbearing, during bedrest, etc. The hope is to establish a standard of service, with continuity of support. We want to make sure our members have all the information they need to make the critical choices forced upon them. The next stage of the plan is to figure out what areas of support we should offer, and develop a task force with volunteers from each service area to identify the priorities and make recommendations.

The experience of our volunteers is critical: they know better than anyone what can help in the midst of a crisis. And sadly, we know how devastating that crisis can be. My heart swells when one of our members who we’ve followed since the loss of a child experiences the healthy birth of another. When our lovely Ileana had her Bobster after losing Angel, when Julie had Jack after losing Zach, when Jenn had Gabe after losing Maggie, and Tracy had Casey after the loss of Katlyne - I couldn’t be any prouder of them than if I was their real auntie. They and others like them are our living hope that there can be joy and life after loss.

Over the past three years, you guys have all become my family. Making sure our ‘girls’ are properly taken care of is – second only to caring for my own kids – my mission in life.

 

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“I have learned through bitter experience this one supreme lesson: to conserve my anger. And as heat conserved is transmitted into energy, even so our anger controlled, can be transmitted into a power that can move the world.” The quote above is from Mohandas Gandhi. I think it captures a very real component of human nature and gives us pause to examine our own behaviors and actions. Tragedy and sadness of any sort can fuel a torrent of emotions—among them anger.

Anger is a reasonable response for a woman who has had preeclampsia and perhaps lost a child or suffered debilitating damage to her body. Anger seems most rational for the husband who finds he is a single parent because of preeclampsia. Anger is almost logical for parents of a premature baby who may face a lifetime of physical and developmental challenges because of preeclampsia.

I get angry too when I realize that ignorance of the symptoms of preeclampsia—simple awareness—might be paid for with a woman’s life or that of her baby. I get really angry when I realize that preeclampsia, when we consider its scope of impact, is one of the most poorly funded areas of research at the National Institutes of Health (NIH).

To be fair, it’s not unreasonable for medical professionals to also well up with anger at the helplessness they sometimes feel when they can assess the problem but have no effective intervention to save mother and/or child. Few things are as frustrating and anxiety producing as the sense of being powerless.

Finally, it’s not at all unreasonable for all of us to seethe over the lack of societal awareness and understanding of preeclampsia. We know that approximately one in 12 pregnancies will result in a diagnosis of preeclampsia and that 25% of those cases will be severe. With 4,300,000 births in the U.S. in 2006—that equates to a diagnosis of severe preeclampsia every 6 minutes of every day of the year. It’s easy to be angry.

The challenge (as we all know) is to not let the anger consume us. For me, this is where Gandhi’s quote becomes useful. If I can use my anger’s energy to address a root cause of that anger—that is anger well channeled.

Over the past few months I’ve had the privilege of getting out from behind my desk to meet many preeclampsia survivors, families, members, supporters, and researchers around North America. To be sure, I cannot presume to know the inner thoughts of all these good people; I don’t know where the anger lies, how deep it may run, or if it’s even there at all. However, I have seen people “well channeling” their energies and I am hazarding a guess that some of it is out of frustration and anger. And my message today is a simple one…that’s OK.

You have every right to be mad—real mad—and as a result, that energy (well channeled) is fueling research as well as public awareness.

That anger has become an empowering, liberating force. None of us know with any certainty if we will be the one to, as Gandhi’s quote suggests, “move the world.” I dare say that Rosa Parks never thought of herself as an American icon—but in her quiet and dignified way—she changed America for the better. She moved the world and I suspect she used a little “anger well channeled.”

Our mission is vitally important and we must use every tool we can to succeed. It’s easy to be angry, but it takes work to harness and “channel” that potential energy. It is that very commitment to hard work and heavy lifting that makes the Preeclampsia Foundation—and all its supporters—a “channeling” force for good.

 

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Minneapolis, MN – September 24, 2009 – The Preeclampsia Foundation announced today that Ms. Kara Boeldt is the 2009 recipient of its annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Ms. Boeldt at its annual benefit gala, Saving Grace – A Night of Hope, on Saturday, October 24, at the Renaissance Chicago Hotel in Chicago, Illinois. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation.

Eleni Tsigas, Executive Director of the Preeclampsia Foundation, said, “It’s hard to identify Kara’s most significant contribution as she has been instrumental in so many areas. This past year she served as our National Walk Coordinator, organizing, motivating and supporting the work of two dozen local walk coordinators across the country. This is our largest awareness event of the year.”

Boeldt also has served for several years as a moderator on the Foundation’s highly active online community forum and annually hosts her own local walk in Madison, Wisconsin. Along with another volunteer, she has organized an active local group of survivors and volunteers. She contributes regularly to the Foundation’s newsletter and was featured recently on the Department of Health & Human Services Office of Women’s Health website. She has also worked with her local hospital and medical community to advocate for better patient-provider communication and has contributed to professional education curriculum via Grand Rounds.

Nominations for the Volunteer of the Year award come from the volunteers themselves. A committee comprising former recipients and a member of the Board of Directors reviews the applications and scores them according to published metrics.

Boeldt, formerly of Chicago, Illinois, owns her own business as a licensed Broker Realtor, in Wisconsin, her home for the past four years. She is in the midst of relocating to Midland, Texas, with her husband, Derek and four year old daughter, Avery. Boeldt suffered the sudden onset of severe preeclampsia at 31 weeks gestation in her first pregnancy. Her daughter was born due to fetal indicators, including severe growth restriction. Avery weighed two pounds, seven ounces at birth, spent 27 days in the neonatal intensive care unit, and came home a month before her due date at a weight of three pounds, eight ounces.

When asked to comment on her award, Boeldt says, “I'm humbled. I consider it a privilege to volunteer for the Preeclampsia Foundation. It’s personally rewarding to be an advocate for those who have yet to experience preeclampsia, and a voice for those who are no longer with us.”

 

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What a whirlwind Walk season it has been! The final 2010 Promise Walk concluded just a week ago. This year, a newly formed National Walk Team (NWT) assisted coordinators
around the country in planning memorable and successful walks. The NWT also created a new and dynamic website (www.promisewalk.org) that enabled Walk Coordinators and participants to easily register and raise donations for their local Promise Walk.

More than 30 volunteer coordinators produced fabulous local events - 24 Walks across the U.S. taking place between April and August, including inaugural Walks in Atlanta and Chicago and adding a second Walk location in both California and Iowa. This volume represents a 60% increase over last year. The 24 Walks collected approximately $168,000, which is more than a 150% increase over 2009. There are many reasons for this increase: more walks, more volunteers, more people becoming aware, and the huge success of the new website.

Coordinators also did a fabulous job getting the media involved to raise awareness of preeclampsia. There were numerous online and local newspaper articles written, blogs posted, a radio broadcast in New Hampshire, and longer feature stories in Chicago, Iowa, Pennsylvania, and Wisconsin media. Coordinators took advantage of the Web 2.0 trend with a variety of social media outlets highlighting Walks everywhere.

All over the country, every person who attended or supported a walk deserves a special "thank you" from the Foundation, the NWT, and all those whose lives have been touched by preeclampsia. So... THANK YOU! Without our volunteers, sponsors, and participants, the Promise Walk couldn't have not just reached, but exceeded its goal!

National Walk Director Becky Sloan says she hopes to see more Walks across the country in 2011, at least one in every state. She commented, "We will have a new goal for 2011 and in order to reach it, we need volunteers - we need you! Walk season begins September 1 and concludes in June with the majority of walks taking place in May because May is dedicated as Preeclampsia Awareness month."

 

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The Preeclampsia Foundation announced today that Ms. Jill Siegel of Chicago, IL is the 2010 recipient of its annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Ms. Siegel at its annual benefit gala, Saving Grace – A Night of Hope Around the World, on Saturday, November 6, at the Olympic Fairmont Hotel in Seattle, Washington. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation.

Eleni Tsigas, Executive Director of the Preeclampsia Foundation, said, “It’s hard to identify Jill’s most significant contribution as she has been instrumental in so many areas. In 2009, she served as our Saving Grace chair, organizing, motivating and arranging everything for our annual fundraising gala and throughout 2010 has done an overwhelming amount of work as our Director of Communications, including spearheading several new publications such as our Expectations newsletter and our 10th anniversary compendium.”

Nominations for the Volunteer of the Year award come from the volunteers themselves. A committee comprising former recipients and a member of the Board of Directors reviews the applications and scores them according to published metrics. These recommendations described Siegel as a tireless volunteer who is “passionate, works well with others…. a true leader, who recognizes people's strengths and talents and motivates them to use these assets to their best ability.”

Siegel suffered from severe preeclampsia and HELLP syndrome with the delivery of her daughter, Brooklyn, in 2004. She delivered Brooklyn 10 weeks early and suffered from multiple organ failure and a post-partum stroke. Upon “recovering” her neurologist told her she had been “the sickest person to leave this hospital alive.” She decided that she would mark her own recovery process by completing the New York City Marathon, which she did in November of 2006. During that time, she became acquainted with the Foundation and decided to turn her “recovery race” into a fundraising and awareness-raising effort. Her story was highlighted on Runner’s World website, calling attention to preeclampsia.

Since 2006, Siegel and her family have helped raise more than $190,000 to benefit the Foundation through her role as the 2009 Saving Grace Chair and co-coordinator of the 2010 Chicago “Promise Walk for Preeclampsia.” Jill Siegel is an award-winning urban planner who has taken a hiatus from her career in planning and economic development to support fundraising efforts at her daughter’s school. She is a native of Enid, OK and attended Agnes Scott College in Decatur, GA and Washington University in St. Louis, MO.

When asked to comment on her award, Siegel says, “I am so honored to be recognized by the Preeclampsia Foundation in this way. The commitment and passion behind this organization continues to amaze me and I am humbled to have been singled out among the many talented volunteers who give a portion of their lives to helping educate and save the lives of others.”

 

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This time of year brings so many warm memories of Autumn's past, but one Fall season in particular brings bitter-sweet memories.

This time three years ago, I was nearing the middle of my third trimester and settling into our new home. I noticed some severe swelling and was experiencing daily headaches. I brought it to the attention of my doctors however they dismissed it as regular pregnancy symptoms.

The day after Halloween I went to my 35 week OB appointment. Everything seemed to be a whirl-wind from the moment I stepped into his office until I was rushed to the OB Triage area of the hospital with complications due to preeclampsia. I was surrounded by a team of eight doctors as they informed me that they needed to get my baby out or both our lives would be in jeopardy.

Little did I know that this was just the beginning of the scariest time in my family's life.

After 13 hours of hard labor our son Brennan was born five weeks premature weighing 4 lbs, 9 oz. He was a tiny little guy in comparison to what I was expecting a newborn to resemble. Within moments after my delivery my vision started fading in and out and I began to experience severe headaches. I was told that my blood pressure would come down after delivery but as doctors came in and out of my hospital room, the numbers continued to climb. My OB said there was nothing left for him to do and I was released from the hospital on blood pressure meds. Within four days of arriving home I couldn't shake the blind spots in my vision and the headaches made my mind and senses fuzzy. The most frightening point came one week after my son was born. I began to slur my words, and my extremities were going numb. I began experiencing all the symptoms of a stroke and my reflexes were locking as I was on the brink of a seizure. I was rushed to the emergency room with a blood pressure of 180/120. For four days the doctors vigilantly watched over me as my numbers continued on an upward trend. It wasn't until I was six weeks post-partum that my blood pressure began to return to normal and over a year before my vision was completely restored.

Too many moms experience preeclampsia and many of them die from this horrible and devastating condition. I was one of the lucky ones. I am a survivor. In my 31 years, I have faced cancer twice and other battles with my health, but have never come so close to death as I did when I had preeclampsia.

Preeclampsia claims the life of 76,000 moms and 500,000 infants each year. My ultimate dream in life is to help educate women and families on the signs of this horrible disease. I am hoping that with donations from my effort, we can pass this information along helping save the lives of thousands of moms and babies and provide support in research to cure preeclampsia. Some of these women will never get a chance to meet their children. I want to ensure that they get that chance.

To honor the memory of the moms who did not have the opportunity to see their children grow up and the babies who never got to encounter all of life's experiences I wanted to find a way to give back. On January 8, 2011, I am raising donations running the Walt Disney World Half Marathon in Orlando, Fla. for these moms and babies.

Editor's note: if you would like to support Laura in her race effort, please contact her at navywifedale@yahoo.com.

 

 

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Posted on in MAKE A DIFFERENCE

Volunteer Profile: Amanda Meier, Baby Fair Coordinator

What was your experience with preeclampsia?

I was having a normal first pregnancy when I started feeling pressure on my upper right side at around 28 weeks. It wasn't very painful at the time and would come and go. I thought it was related to all the over-eating I was doing! At some point in my 30th week, the pressure became a daily occurrence. I asked my midwife about it and she felt it was likely heartburn. I had never had heartburn in my life, so I had no point of reference. My blood pressure at the time was 138/80 and there were trace amounts of protein in my urine dip. Two days later, the pressure turned to pain and I was unable to eat or drink anything. I was admitted to Labor and Delivery with questionable labs results. The next day, a diagnosis of HELLP Syndrome was confirmed and I was transferred by helicopter to a hospital with a neonatal intensive care unit. I was induced and delivered Bennett at 31 weeks 2 days.

Why do you volunteer for the Preeclampsia Foundation?

Volunteering was part of the healing process for me. It took a couple of months after Bennett's birth before I was ready to face any preeclampsia- or HELLP-related information. I have gotten so much information and support from the Foundation Forums and felt like I needed to be a part of this amazing organization.

What goals and dreams do you have for how the Preeclampsia Foundation could inspire more awareness raising activities?

From my experience so far, I think connecting volunteers is one of the most important things the Foundation can facilitate, especially volunteers in the same geographic location. While the Community Forum is a great place to connect with other survivors, there is nothing like actually being in the presence of those who share your experiences to get you inspired. I have learned that not all Preeclampsia Foundation members frequent the forums, but that doesn't mean they aren't an important resource for local events and activities. In fact, they are excited to be involved in any way they can.

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

I had no idea what preeclampsia was! My midwife never discussed it as a possibility and it was glossed over in every baby book I ever read. I'm sure some of my ignorance stemmed from the "nothing will happen to me" mentality that many pregnant women seem to have.

What resources do you find most helpful to volunteers and Foundation members?

Let's see....the Forums, the Forums, the Forums! It is so comforting to know that I can log on each day to be supported by other women who understand. The other volunteers are also very helpful. They are always there to answer questions about organizing events. It's really amazing that this organization is run almost entirely by volunteers.

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

It was wonderful to see the volunteers around the Denver area come together to help with the baby fair booth we recently organized. That activity connected us with another and we have had subsequent meetings to plan future events. I truly believe that we are a strong resource for the Preeclampsia Foundation in Colorado.

 

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Posted on in MAKE A DIFFERENCE

Volunteer Profile - December 2010

Becky Sloan, National Promise Walk for Preeclampsia Director

What was your experience with preeclampsia?
I began experiencing face and body swelling and headaches at 22 weeks. These symptoms, along with extreme weight gain, bouts of high blood pressure, and lower fetal movement, continued until 31 weeks. My doctor was never concerned with my symptoms and told me that ‘if I didn’t stop gaining weight, I would gain 70 lbs. before the pregnancy was over.’ I didn’t make it out of the office before I burst into tears. I felt awful, like no one cared, and I still had no idea what preeclampsia was because the signs and symptoms were never mentioned to me. I was never diagnosed with anything more than ‘being a first time worried mom,’ and at 31 weeks, 6 days I went into code blue eclamptic seizures. I actually had a doctor’s appointment earlier in the day and was told to continue to take Tylenol for my excruciating headache and was sent home. Later that evening, I was home alone and called labor and delivery to ask for help. I was told I needed to go to the hospital to be assessed. I decided to drive myself to hospital so as not to bother anyone at that time of night, but not before getting sick in my driveway…another classic preeclampsia symptom. I had enough sense to know that I was not in my right mind but that I shouldn’t wait for a ride. Luckily I didn’t wait, because if I had waited for a ride from a friend or even an ambulance I don’t think I would be here today. I somehow made it through the city despite seeing stars, almost driving into parked cars, and weaving all over the road. I parked my car and walked into labor and delivery thinking they would put me on bed rest, but I was quickly escorted to a room and eleven short minutes later, I began seizing and lost consciousness. My husband didn’t have a cell phone at the time, so I had no way to contact him. He came home to a post-it note on our door that said I had gone to the hospital. He had no idea what he was about to face: three hours of not knowing if his new wife and baby would survive this ordeal. I am happy to say WE did! On October 30, 2004, our son, Jacob William, was born two months premature due to severe preeclampsia, and surprisingly neither one of us had any lasting health issues. We have since been blessed with a baby girl in 2008, Brynn Holland, who arrived a month early due to sudden onset of preeclampsia.

Why do you volunteer for the Preeclampsia Foundation?
I volunteer because my family and I are some of the lucky ones. Many Foundation volunteers unfortunately are here to honor those whom they have lost. I am here to stand up and say that you shouldn’t have to lose a child, daughter, sibling, or grandchild in order to make a difference. What happened to me wasn’t ok. My pregnancy ordeal should have never happened. My doctor was obviously incredibly uninformed about preeclampsia, which in turn made me unaware of the disease. I volunteer to raise awareness by telling my story. If my doctor would have known; if I had known the signs and symptoms, maybe my story would have been different and most likely I wouldn’t be volunteering. I guess you can say the Foundation was lucky in that respect!

What goals and dreams do you have for how the PF could inspire more Walk activities?
Ideally I would like to see walk coordinators not have to worry about finances and sponsors, and be able to focus more on participation and raising awareness. If the Promise Walk gained continuous national sponsorship support, our volunteer coordinators would be able to spend their invaluable time in the local community raising awareness and encouraging participants to walk rather than wondering how they are going to pay for their walk.

How aware were you about preeclampsia before/during your pregnancy?
I read the two or three sentences in What to Expect When You Are Expecting. I never heard a word about it from my OB throughout my entire pregnancy and certainly didn’t know that high blood pressure or swelling were symptoms associated with the disease.


What resources do you find most helpful to volunteers and Foundation members?
The Foundation gave me a starting point to figuring out what happened to me. Even after meeting with my doctor to get answers, I was told that my case was considered ‘a fluke.’ That was it… no responsibility taken for what happened or ‘we are sorry for your ordeal.’ It was strangely comforting to know I wasn’t alone and a place I could go to be miserable, not having to put on a fake, happy mommy face. The friends and collaborations I have made through this organization over the years are partially responsible for the healing I went through to ‘get over’ what happened to my family and me.


What has been your most gratifying moment as a Foundation volunteer?
I don’t know…tough question. Coordinating walks in San Diego while accepting the National Walk Director position this past year has been a lot of hard work, so I don’t think that I have had time to enjoy the success of the Promise Walks. I feel like I still have a lot of work to do, because we have many areas of the US that aren’t holding walks. I have high expectations for myself and for the Promise Walk, so I am not sure I have had my most ‘gratifying volunteer moment’ yet. I can say that I am very proud of the work I have done thus far and am hopeful that the work I am doing today, tomorrow, and in the future will bring me to that most gratifying moment. I guess maybe the day my daughter doesn’t have to worry about preeclampsia, I will feel that moment.

 

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Volunteer Profile- January 2011

Nicole Purnell, Southwest Regional Coordinator

What was your experience with preeclampsia?
My pregnancy seemed rather normal and uneventful to me until I reached 33 weeks. My blood pressure had been creeping upward, but I wasn't concerned about it. I had a terrible cold and was taking meds that raised my blood pressure even further and that was when I was put on bedrest. At 34+5 weeks, I woke up in the middle of the night not feeling right. My husband took me to L&D just to be safe. Or so we thought. Once we got there and were checked in, the nurses started hooking me up to all the monitors. The monitors were silent and they were not able to find a heartbeat. When the epidural was place, I crashed. I remember my OB slapping me on the legs and yelling at me to breathe. I was rushed for an emergency c-section and they discovered that my placenta had completed detached and I was bleeding internally. Those first 24 hours I survived a second surgery to resolve the uncontrolled bleeding, DIC, kidney and liver failure and 13 blood transfusions. I spent 5 days in ICU and another 4 days on the post-op floor before being discharged. A few days after my discharge, we buried our son.

Why do you volunteer for the Preeclampsia Foundation?
There are so many reasons why I continue to volunteer. It started with wanting to spread awareness so other families would have to go through what we did. There is still a huge need to spread awareness and for mom's to take preeclampsia seriously. I want to be able to support families that have had a loss and let them know that they can survive through the pain. They can build a legacy for their children so that they live on.

What goals and dreams do you have for how the PF could inspire more local activities?
We all realize how traumatic preeclampsia is even with the best outcomes. There is a need to connect to other families that truly understand how pregnancy isn't always blissful and happy. We can support each other through the hard times and celebrate when we cheat this disease from another tragedy. We need leaders to take that step of faith to reach out to others locally. When we gather, we create awarness and community.

How aware were you about preeclampsia before/during your pregnancy?
I was blissfully ignorant. When preeclampsia was first mentioned to me, I ran to my pregnancy books which mention it in almost passing. The short paragraphs feed my naivete that all things would be fine and this was a rare complication and the worst that could happen is that I get put on bedrest and deliver a little early. I had no idea it could end like it did.

What resources do you find most helpful to volunteers and Foundation members?
The forums! The Grief and Loss forums were an amazing area of support for me. Not only did I find other moms that had lost babies, but had lost them in the very same traumatic way that I did. I found moms that walked in my shoes and there is immense comfort in knowing you aren't alone.

What has been your most gratifying moment as a Foundation volunteer?
Going to Saving Grace was an amazing event and it was wonderful to "meet" the people I have been working with for years. But hands down the most gratifying was the 2010 Promise Walk. There were many moments where I looked around in awe. To think that I would never have had that opportunity if my world hadn't been turned upside down. When we started adding up all the numbers in the end, I sat there and cried. Every person that came and every dollar that was raised gave meaning to my son's sacrifice. Even though he never took one breath, he has lives on through others.

 

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

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

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

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

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

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

Happy Mother's Day to all!

 

 

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Upon being diagnosed with any medical condition, it is human nature to ponder, "Did anyone in our family have that?"

This is especially the case when diagnosed with preeclampsia - what our mothers' and grandmothers' generations called "toxemia."

When I was diagnosed with preeclampsia during the 35th week of my first pregnancy, I was mystified and kept thinking: What on Earth is this? I am 27. I run. I eat well. My blood pressure is always a perfect 120/80.

But I have to say before any of these questions surfaced, I looked to my mother and asked, "Mama, did you have that?" She looked at me with tears in her eyes and shook her head no, unable to give me the normal guidance and comfort that mothers so naturally bestow.

One woman that could provide some guidance was my mother-in-law, Kathy Hutchison, who immediately called me upon hearing my diagnosis, being a two-time survivor herself. What were the odds that she too had had preeclampsia?

Fairly high, according to Dr. Ashley Hill of Florida Family Practice, who described a variety of genetic links currently being researched, including placental issues, compromised immune systems and genetic protein markers.

I questioned my mother-in-law her about her experience with preeclampsia, not realizing how much it would impact my life or that I would one day be volunteering with this Foundation to help other women like me and my mother-in-law.

According to Kathy, preeclampsia was known during the late 70s and early 80s as, "the pregnancy disease that you get and that goes away when you give birth." Though Kathy suffered from preeclampsia with her first child, (my husband) she noted that the term 'preeclampsia' was not really used until the late 80s, when she was pregnant with her second child.

The accompanying rumors and misinformation were much the same as today: If you had it with one child, you will not have it with another; giving birth is the cure, etc. Kathy noted that doctors did not tell her much about the condition, just the symptoms: protein in your urine, consistently high blood pressures, and severe edema.

She not only had preeclampsia with both her pregnancies, but her own mother had preeclampsia in the early 1950s with her and had almost lost her life. Kathy added that her mother only spoke of her experience briefly, and mentioned that she really "felt like going towards the light": not simply experiencing high blood pressure, but essentially realizing that she was dangerously close to death. When asked if Kathy believes in the generational component of preeclampsia, she quickly added, "I do. I had it and then my son produced it. How could I not?" Kathy also noted that she knew of no one else who suffered through the disease other than her mother and sister, and was given virtually no information about the potential outcomes.

Although genetic research into preeclampsia is continually changing, a well-established finding is the link to heart disease, especially in women with a history of severe preeclampsia.

In the case of Kathy, her mother, and sister, there was no such link. Heart disease was absent from their family's medical history, but then again, as she noted, "times are different." Today, women are more empowered to take responsibility for their health and knowledge about conditions affecting their pregnancy, as the Preeclampsia Foundation continually advocates.

Thirty years later, it may seem as thought nothing has changed--the same rumors, no cure, no known cause-- but there really have been some strides: identifying the link to heart disease and communities like the Preeclampsia Foundation, where women talk about life-threatening pregnancy conditions like preeclampsia. It is no longer a taboo subject among pregnant women.

So this Mother's Day, pull up a chair next to your mom, your grandmother, your mother-in-law, your sister... and share your common experience. The more we talk, the more we will know. Heart-to-heart really does work.

 

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Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.

For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal Center maintains a 24-hour hotline to facilitate the transfer of high-risk mothers and infants. Through the perinatal center, Rush offers an extensive series of classes for physicians, nurses and other health professionals. Other centers are housed out of the Other centers are housed out of the University of Chicago Perinatal Center; John H. Stroeger, Jr. Hospital of Cook County Perinatal Center; Northwestern/Childrens/Evanston Perinatal Center; University of Illinois /Christ Perinatal Center; Loyola University Perinatal Center; Northwest Illinois Perinatal Center - Rockford Memorial Hospital; North Central Perinatal Center - St. Francis Hospital; South Central Illinois Perinatal Center - St. John’s Hospital; Southern Illinois Perinatal Network - SSM Cardinal Glennon Children's Medical Center and SSM St. Mary’s Health Center.

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

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

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

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

 

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For Dallas-area volunteer Nicole Purnell, fundraising for the Preeclampsia Foundation is nothing new: she is currently in her fourth year as the Dallas-Ft. Worth Promise Walk Coordinator. So when she and her family decided to do another fundraiser for the Foundation, they decided to try something entirely different, and catered to their home state of Texas: a clay-shooting tournament to be held March 10.

"Of course, I realize that shooting clays is not an activity for everyone's taste, but this IS Texas after all!" explained Purnell. In organizing the event, she and her stepfather, who is co-hosting the tournament, realized that this would be a unique opportunity to pull in a different crowd than that of the Promise Walks for fundraising and awareness.

"My stepdad is a retired Navy SEAL and has many friends who enjoy clay shooting," Purnell said. "I had been wanting to do a clay shoot event for some time, and then, one day I got my daily Groupon e-mail. Low and behold, there was a clay shooting location about 20 minutes from my house! The location, Fossil Pointe Sporting Grounds, is on approximately 400 acres of prime North Texas "Hill Country" with amazing views."

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

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

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What was your experience with preeclampsia?

In my first pregnancy I wasn't worried about PE at all; everything was going smoothly until 31 weeks when, at our last childbirth class on a tour of the hospital's Labor & Delivery (L&D) ward, I started having painful contractions. We ended up calling my OB from the hospital parking lot and she told us to go back up to L&D where they hooked me up and determined - yes - these were real contractions & I was starting to dilate. Many hours of monitoring and couple shots of terbulaline later they sent me home. I ended up at my 37 week appointment, being sent over to L&D for an induction because of preeclampsia.

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

I'd never really heard of preeclampsia before my first pregnancy. During my pregnancy as I started having high BP sometime around 34 weeks it got mentioned and I knew there were some things to watch for and to call in about. But no one ever mentioned that upper right quadrant pain was not normal.

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

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

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

Why do you volunteer for the Preeclampsia Foundation?

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

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

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

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

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

 

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During the week of March 26, 2012, the Supreme Court of the United States heard arguments about the constitutionality of the Patient Protection and Affordable Care Act (ACA), otherwise known as the Health Reform Law. As the Preeclampsia Foundation continues to advocate before state and federal policymakers on maternal health issues, we are watching closely to understand what affect the Court's decision(s) will have on women and their families.

The following is an overview of the key questions being considered by the Court after three days of debate - the longest hearing on a single case heard by the Supreme Court since 1966.

Should the law even be considered by the Court at this time - the Anti-Injunction Act? The court must determine whether the case can be decided now, or whether the court must wait until 2015, when the tax provisions of the law (individual mandate requiring individuals to purchase health insurance) go into effect. The basis for this decision is based on a 140 year-old law called the 1867 Tax Anti-Junction Act, which says that people can't sue over a tax until they actually pay the tax. This decision affects whether the court can consider the other issues below.

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

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

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

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

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

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

 

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By Jill Siegel ~ As Father's Day approaches, I feel honored to be able to give a very personal shout-out in this newsletter to my husband and our daughter's father, Jeff Siegel. There are so many Preeclampsia Foundation fathers, husbands, and partners who are often 'silent partners' in our volunteer efforts. Any one of them - pick a name: Dan Sloan, Tim Purnell, Todd Beadle, Demetri Tsigas, Jason Drews, Kurt Detweiler, Jay Weeks, Tim Aiken... and the list could go on and on - could be profiled here. For one, I have to laugh when I recall Tim Aiken's help at the 2011 Chicago Promise Walk and 5K Run. Due to a misunderstanding with one of our vendors, he and I found ourselves driving in a car along a bike- and pedestrian-only path in order to mark our course!

I am sure all the many 'silent partners,' like Jeff, have schlepped more than a few tables to a Walk, occupied a child or overlooked household chores so their partner could take another volunteer conference call, and leveraged their own personal and professional relationships to garner donations to or awareness of the Preeclampsia Foundation.

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

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

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

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

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

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

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

 

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Last week, the Supreme Court upheld the constitutionality of The Patient Protection and Affordable Care Act, otherwise known as the "health reform law." This means that implementation of this landmark legislation can continue to move forward. However, the law continues to be the subject of debate through this year's presidential and congressional election cycle, and depending on the election results could be altered by Congress and the White House in the future. As it currently stands, the law directly benefits childbearing women and newborns by:

  • prohibiting the use of pregnancy as a preexisting condition by health insurance providers;
  • widening access to certified nurse-midwives by eliminating inequities in how they are reimbursed under Medicare;
  • paying for home visits by nurses for at-risk families during or after pregnancy;
  • expanding access to primary maternity care by improving Medicaid coverage of freestanding birth centers;
  • expanding access to Medicaid and affordable private health insurance for women of childbearing age who are now uninsured or under-insured;
  • requiring maternal health coverage as an essential health benefit to be provided by individual and small health plans offered within state health care exchanges.*

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

*Some information above provided by Childbirth Connection

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What was your experience with preeclampsia?

I had preeclampsia with both of my pregnancies. With my first child, I was not made aware of the symptoms of this condition, so when I started having side pains, I just thought I had a cramp, nothing serious. I had gained a significant amount of weight, but had no basis of comparison, so I believed it to be just the nature of being pregnant. I went from 115 lbs to 180 lbs and assumed that was normal. I was swollen, short of breath, and generally unhappy. By the time the high blood pressure became a threat, it became significantly high. Because my proteins showed up during a routine visit and at about 28 weeks, I was put on bed rest, and was administered Labetalol to manage my blood pressure. After I gave birth at 35 weeks with my eldest daughter, I was told I had been preeclamptic but that it was "not a big deal." I was reassured it does not necessarily happen with every pregnancy, so I was told, for my next baby... "Let's plan to have a drama-free pregnancy."

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

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

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

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

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

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

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

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

What has been your most gratifying moment as a volunteer?

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

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

 

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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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What was your experience with preeclampsia?

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

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

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

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

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

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

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

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

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

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

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

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

What has been your most gratifying moment as a Foundation?

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

 

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