Navigating a pregnancy with cEDS

Posted January 28, 2021

Devyn sits on a hospital bed with her arms folded, her right leg in a pink cast

Hi, I am Devyn and I am 21 years old.

I have classical EDS (cEDS). It took me six years to get a diagnosis, from age eleven until age seventeen. I started noticing symptoms at age 11, but now looking back, I have had symptoms since I was younger. 

I would constantly sprain my ankles, my legs being in pain. I loved soccer growing up, I started at age four, but my ankles would constantly be bruised and swollen. I noticed I never had to correctly stretch to be flexible amongst my peers. I only noticed dizziness, visual snow, and tinnitus at age eleven. I thought it was the flu, but these never went away. 

Through the years more symptoms came about, struggle with eating, bathroom issues, ribs slipping, fainting, eye flutters, the list goes on. Through those years, I was seeing specialist after specialist. I was constantly being misdiagnosed. I was stuck at neurology for some time until a doctor finally stated “something is going on in the center of the brain, but unsure of what it is.” 

After that, I took a break from specialists thinking there was no hope. I had to become homeschooled in that time period due to my health at that time. I started to pass out during school. I saw my primary care doctor due to fainting episodes when I was sent to cardiology to be evaluated for my heart which is where my first official diagnosis was. When I was sixteen, I was first diagnosed with mitral valve prolapse. After a week of heart monitoring, I was then diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). 

The doctor who diagnosed this referred me to a genetics doctor to be evaluated for EDS, he was informed on EDS due to his daughters having vascular EDS (vEDS). I saw two separate genetic doctors and both stated EDS, but never continued care with me afterward. Both told me there aren’t enough resources or research for EDS, which left me stuck at a standstill from there. I am currently 30 weeks pregnant and I wish I had an established care team to take care of and give me information about EDS/POTS with pregnancy. 

My symptoms for both EDS and POTS have been triggered from pregnancy and I am unsure of how my birth will be and postpartum. I am unsure if I will be stuck in a flare-up, I am nervous for the future with not receiving follow-ups or plans on how to manage EDS and POTS for my future life, and I want to be the best mother I can be even with chronic health conditions.

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