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I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the military had worn away my lower extremities.
I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic tachycardia syndrome (POTs) after shingles that I found out what Ehlers-Danlos syndrome was.
My time in the military wore out my knees and ankles. My ankles rolled consistently and my knees gave out. I sought a diagnosis but was told that by my age, I would be in a wheelchair with scoliosis if I “truly had EDS”. Then we ruled out every other cause for my pain and loose joints. I was told that an official Ehlers-Danlos diagnosis doesn’t matter; it’s just a name they give a group of symptoms and nothing more.
It was the Veterans Administration that got me my diagnosis a year later. I was an “open and shut” case. When I had my right foot fused last year, it was 8 weeks before all my stitches were out. Fifteen weeks before I was able to drive. The surgery is an 8-week recovery for “typical” people. And the first doctor said the diagnosis wouldn’t matter!
Since then, my daughter has been diagnosed with hEDS and my son with HSD. Their diagnoses matter. It matters so I can help them live as high a quality of life as possible, so they don’t have both feet fused and braces on their knees, fingers, and wrists by age 33.
We work hard to raise awareness about Ehlers-Danlos syndrome through painted rocks that we hide around town and presentations. I tour the Midwest talking about invisible disabilities, inclusion, accessibility, and awareness. I am privileged to have the platform I do to do my part, as well as empower and lift up the voices of others.
My hope is that we can build a world where we recognize that we are all different but wanting the same things – community and love. A world where people are not judged because they don’t look “disabled enough” or because they do things differently.Tags: advocate, awareness, Diagnosis Journey, hEDS, HSD, hypermobile EDS, POTS
Categorized in: Stories