At 17 years old, I was a high school athlete with dreams of college and a future filled with possibility. Then, the pain started. First in my back and neck, then in my knees, fingers and hands. At first, they told me it was just growing pains, or maybe overexertion from my active lifestyle playing basketball or volleyball. Once the pain extended to my feet, my parents knew something was wrong.

What followed was years of confusion, misdiagnoses and frustration. I was bounced between doctors before I was finally diagnosed with ankylosing spondylitis, a rare autoimmune disease that primarily affects the spine and major joints. It causes inflammation that can deform fingers and toes, create chronic swelling, and severely limit mobility.

The condition is difficult enough. But what’s made it w

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