Cassidy DeMona | CaringBridge

Cassidy DeMona Cassidy's EDS Journey

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Hi! My name is Cassidy DeMona, I'm 18 years old, and this is my story. 
The summer after my freshman year of high school, I got really sick, and we couldn't figure out what was wrong. I was so much pain I couldn't get out of bed, much less go to school or do anything I wanted to, like dance. We saw hundreds of doctors, and had scans and tests and blood work done for everything you could possibly think of. No one could figure out what was really wrong with me, until we went to the Joseph M. Sanzari Children's Hospital at Hackensack University Medical Center. A team of geneticists there ran a full genetic panel on me and both my parents, and I was finally given an answer. 
I have Ehlers-Danlos Syndrome Type 3. I was born with it, but like many cases, it started causing problems after I finished puberty. Having EDS means that my body doesn't properly produce a substance called collagen, which helps in the formation of connective tissue. Connective tissue makes up a lot of important things- muscles, tendons, skin, your heart, your stomach, and a bunch of other organs. So when it doesn't form right, it causes a lot of problems. After my EDS diagnosis, answers started falling into place. I was diagnosed with multiple conditions that go along with having EDS, including gastroparesis, a Mitral Valve Prolapse, and secondary Fibromyalgia. 
It's been a long road, but I am winning my fight. I just started my freshman year of college; something we weren't sure I would ever be able to do. I am pursuing my dream of becoming an elementary school teacher. I have also started a non-profit organization called Invisible No More, to help kids like me. You can find us at 
I am defying all the odds. I am winning this fight. Ehlers-Danlos has nothing on me. 
Thank you for visiting my page.

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