Tag Archive: Self-Advocacy

I’ve learned so much from connecting with others in the community

At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS).  After listening to my entire history of being a dancer as a child, always […]
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My EDS diagnosis was questioned because of my weight

“Wait, you can’t have Ehlers-Danlos syndrome… can you?” So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for […]
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My symptoms were dismissed as psychosomatic

I was diagnosed with hypermobile-Ehlers Danlos syndrome (hEDS), Postural orthostatic Tachycardia syndrome (PoTS), and related comorbidities when I was 20. It represented the culmination of six years of searching for answers to explain my complex symptom presentation and the reason for a lifetime of recurrent pain.  After such a tumultuous diagnostic odyssey, it was also […]
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I did not get answers until I advocated for myself

Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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I’m thankful for my early diagnosis

My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises. […]
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