Heather Blair

For 23 years, I lived without knowing I had a genetic connective tissue disorder. Growing up, my symptoms were dismissed as growing pains — significant joint pain, hypermobile joints, and "cool party tricks" like touching my thumbs to my wrists. I didn't know any of it was a clue.

At 15, I woke up one day needing major spine surgery without having been injured or in an accident. I had two herniated discs, spinal stenosis, and foot drop severe enough to leave me homeschooled mid-year. At 21, I woke up needing ulnar nerve surgery on my left arm. Then, in early 2023, the foot drop returned. I had re-herniated the same two discs and needed a spinal fusion. Each time I needed surgery, I had no explanation as to why. Each time, my concerns had been dismissed.

It was my spine surgeon who finally connected the dots, referring me to rheumatology for possible Hypermobile Ehlers-Danlos Syndrome (hEDS), connective tissue disorder affecting joints, skin, the nervous system, and nearly every part of the body. Several doctors during that hospital stay pointed to the same signs: translucent skin, difficult IVs, extreme hypermobility, severely flat feet. When I finally saw the right rheumatologist, he diagnosed me almost immediately. He said I was a classic hEDS patient based on my appearance alone.

In that moment, relief and grief arrived together. Relief that there was finally a name for the surgeries, the pain, the unanswered questions. Grief for the years spent doubting myself, wondering if it was somehow my fault.

My medical history now includes eight hospital stays, four spine surgeries, two elbow surgeries, a CSF leak repair, autonomic nervous system deterioration, and a migraine disorder.

I advocate because chronic illness is not a temporary struggle, it is a lifetime of starting over. But if sharing my story helps even one person feel seen, understood, or diagnosed sooner — that is enough. I refuse to let hEDS define me.