I decided that I wanted to start a blog about my journey with Ehlers Danlos Syndrome (EDS) to connect with others with the same diagnosis and to share my journey. I was 34 when I heard that I have EDS. I had taken my daughter to see a dermatologist for a funny patch of skin on her chest. The pediatrician believed it was alligator skin. After seeing the dermatologist, he was not convinced and said to give him a day to research. The next morning he called to say that he believed she had a condition and wanted us to see the top specialist in the country. Lucky for us, he was at Yale New Haven Hospital and only 30 minutes from our home. After completing a physical exam, he confirmed she has EDS. When I asked him if we do genetic testing to see who she got it from, he said there was no need to. He knew just by shaking my hand that she had gotten it from me. He explained that the way in which my wrist moved when he shook it and how soft my skin was, told him I also had it.
Fast forward 16 years, my body has decided to throw me curveballs. While I was told by a pediatric dermatologist that I had EDS, he could not formally diagnose me. Roadblock after roadblock of hospitals no longer testing for Ehlers Danlos, including Yale, I needed answers and an official diagnosis for myself.
I met with Dr, Jackson, a Rheumatologist with Hartford Healthcare. He took the time to examine me, ask all the questions others didn’t ask and handed me a tissue when the tears began to flow. I was finally being heard. I finally had an official diagnosis. 16 years of fighting for my daughter to make sure she didn’t get injured in school or dance, ensuring that she received the care she needed and that doctors understood what EDS is and how it affects her. It is now my turn to work with doctors to help and support me through this painful and exhausting journey.
