Ehlers Danlos Syndrome 6 Spells Multiple Problems for Dagmara

May 15, 2013

I have Ehlers-Danlos syndrome.

One name. A thousand problems.

It started when I was born. The doctors said I was a “floppy” baby–which generally indicates a form of autism. But I was also born with hyptonia, scoliosis, dislocated hips and breathing problems. So the warnings of autism weren’t taken seriously.

The only thing that was treated throughout my life, up until age 36, was my scoliosis. That was the year I got my diagnosis of EDS6a. By that time I had severe hypotonia, bile duct dysfunctions, fibromyalgia, chronic fatigue, brain fog, blue sclera, a metabolic snydrome, Oddi’s sfincterotomy, colitis, organ prolapse, orthostatic intolerance, dysautonomia, anaemia–I also had my gallbladder removed and was diagnosed with Aspergers Syndrome.

My doctors at home (in Warsaw, Poland) were shocked. They had never seen a patient like me before.

Now I’m still standing. I’m a part-time wheelchair user and a full-time smart crutch user, and I’m happy with that because most of the “sixes” loose their ambulation in the second decade of their lives. I’m still alive which really boggles doctors. And I’m going to stay this way. 🙂

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