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Influencing Change Through the Patient Voice

The Preeclampsia Foundation mission is not only patient centric, but patient driven, meaning that we use the patient voice, or “lived experience” to inform our operational decisions. One way in which we stay accountable to the patient voice, is through our Patient Advisory Council (PAC). The council brings together women from all over the U.S. representing different backgrounds and experiences. The PAC includes women who have experienced varying degrees of hypertensive disorders of pregnancy. We would like to honor one of these council members, Ushma Patel as our August champion of the month!

We asked Ushma to share, in her words, how she become involved with the Foundation.

 

In June 2013, I got pregnant very quickly after my husband and I started trying. We were very excited and I was in the best shape of my life. My pregnancy was quite typical – I experienced the usual symptoms such as morning sickness, heartburn, fatigue. The doctors were never worried and for the most part, neither was I. 

As I approached 36 weeks, I knew that something was off. After a few days of swollen ankles, puffy eyes, pain on the right side of my abdomen, and just a general feeling of sickness, I decided to take action. I got my blood pressure checked at the local pharmacy and it was unusually high. In the back of mind, I had a feeling that my symptoms could be preeclampsia, a condition I had briefly read about in pregnancy books and online. I made the call to my doctor and was asked to come to the hospital as soon as I can.

The next 48 hours were a blur to me. My doctor confirmed my fear and diagnosed me with pre-eclampsia and partial HELLP syndrome. I delivered the following day via C-section and gave birth to a beautiful, little girl. She was perfect and we were finally a family of three. The next few days were stressful though…being on magnesium sulfate, learning to breastfeed, multiple providers coming in and out of our room at all hours, and the pain from delivery. 

After several days, I still did not feel well. I insisted something wasn’t right and the doctors finally ordered a CT scan. I ended up suffering from a subarachnoid brain hemorrhage and was transferred to another hospital 30 miles away for care in the neurosciences ICU. My daughter and I were separated for almost 1 week and my recovery was slow. 

After we got home, I started looking into the Preeclampsia Foundation website. I found comfort in reading stories of other women who had experienced something similar. Given my professional background in health policy, and research in patient and family engagement, I couldn’t just sit around and do nothing. I noticed the Foundation was accepting applications for their Patient Advisory Council and decided to apply. 

 

We could not be happier with Ushma’s involvement in the PAC. Unfortunately, families most often find out about the Preeclampsia Foundation after diagnosis or an adverse outcome. We have been increasing our efforts to reach expectant moms before diagnosis, so they can recognize and respond appropriately to symptoms. One way in which we accomplished this was a partnership, producing a webinar with Ovia Health. Ovia’s primary audience is expectant moms. Ushma shared her personal journey on this webinar, highlighting the fact that Preeclampsia struck when she least expected it and reminding moms-to-be to remain vigilant.

View the webinar here!

We aim to offer rewarding opportunities for volunteers, where they can feel they are making an impact. We asked Ushma what she liked most about her volunteer work with the Preeclampsia Foundation?

The council brings together women from all over the U.S. Although we have different experiences and outcomes, the common thread is that we all experienced this horrible, debilitating condition. As a group, we are able to be the voice of women and represent them as advocates. Volunteering with the Foundation and being part of the Council has helped me heal from the grief experienced and feel like I’m part of something bigger and better. If you feel like you are physically, emotionally, and mentally ready to give back, then just do it! It takes time to heal and this is one way you can support yourself and help others in the process. 

 

One great way to get involved today is to join us at our Champions for Change Summit. Our Patient Advisory Council will be our hosting committee and we would love for you to meet them and see where you fit in, in the larger cause of improving maternity care.

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