Published: 18/07/2018


by Chrystal N.

My EDS journey began when my mother was diagnosed with EDS in 1994, due to the finding of multiple blood clots in her arms and legs. My brother and I were later diagnosed in 1997. Learning to live with Vascular EDS became a reality for each of us in separate ways.

My brother suffered a bowel perforation in his early 30’s and again in October 2016 which claimed his life at the tender age of 40. After many surgeries, and health battles, my mother also suffered a bowel perforation and it too claimed her life on September 9, 2017. After losing two of my closest family members within 1 year, heartbroken and now being the only one in my family currently living with EDS, I struggle every day, with what could be for me.

When I was 32 years old, I became pregnant and all the doctors at the renowned Johns Hopkins Hospital advised me that having my baby was not the smartest idea, that in fact, I should terminate her. I decided that my Faith was stronger than my fear. I advised the doctors that I no longer wanted to discuss termination and wanted to move forward with a positive, healthy pregnancy. Upon my delivery, I suffered a Uterine Rupture and was admitted to ICU for 7 days. However, my daughter was completely healthy. When I heard her crying, I knew she was ok. Faith Noel is her name and for good reason, I would say.

Knowing that I have lost my mother and my brother to this horrendous disease and living with the thin skin, easy bruising, blood clot threat and all the possibilities have not discouraged me from making the best out of life but has encouraged me to not only educate myself, my family but the world. I asked my doctors at Johns Hopkins to take my chart and use it for whatever research is needed to find a cure. Whenever I meet a med student, I encourage them to write their thesis on EDS.

After learning about the existence of the Ehlers-Danlos Society and the local support groups, I felt like such a new person because for once I didn’t feel alone in this fight. At every opportunity, I encourage others to donate to the Ehlers-Danlos Society.

For however long God gives me on this earth; I would like to make each day count. If I educate just one person a day or even a week, when my time here is over, my family will be able to say she made a difference in at least one person’s life.

I pray that my experience will encourage someone else to have as much Faith as I do.



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