Published: 02/02/2024 Tags: Stories

My diagnosis of cEDS changed my whole outlook on life

I am currently 30 years old. I have classical Ehlers-Danlos syndrome (cEDS), and I was diagnosed at age 24.

I’ve had nine pregnancies with three living children; due to my EDS and comorbidities, I have a hard time staying pregnant with my children. I have had four hip surgeries in three years, and I am currently waiting to have another.

I fractured my spine at age 14 playing softball, and I also started having issues with my POTS at the same age, and I passed out playing softball.  I have POTS, hip dysplasia, scoliosis, spinal stenosis, osteoporosis, anxiety, depression, and PTSD. My joints have subluxations and dislocations.

When I finally got diagnosed, I cried because someone finally told me I wasn’t crazy. I had been called a hypochondriac my whole life, and someone finally told me I wasn’t. It changed my whole outlook on life. I would love to be involved in advocacy work or something to help others like me!

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