I was always a clumsy kid. Constant ankle sprains, fingers bending back weirdly, not holding a pencil right—just little things I didn’t know were signs of anything. My cousins and I had flexibility contests (plot twist: they have EDS too). Eventually, those “silly little things” became real problems.

In high school, I had my ankle reconstructed after a trampoline accident. A few years later, I needed the same surgery again. The surgeon—who had just been interviewed as one of the top doctors in the area—told me, “I’ve never seen this come undone before.” I came to find out later, he actually noted hypermobility in my chart at that point, but I didn’t know it yet!

Through college, I was constantly dealing with pain and dizziness. I chalked it up to stress or being “just sensitive.” Then one day in a kinesiology lecture, my professor said, “Everything would work like this... unless you have Ehlers-Danlos Syndrome,” and immediately brushed it off. But I sat straight up. I felt that.

I ran up to her after class, “That’s me!! I think that’s it! I think I have that thing you said, will you say it again for me please?!”, and she told me, “Oh no, don’t worry, that’s too rare. You’d be in a wheelchair.” I couldn’t even spell it right for a while, but I kept trying to Google it now and then. It always stuck in my brain as maybe this is it… yet this is all I knew of it at the time, so I mostly dropped it.

Years later, in a pathophysiology class, we were asked to choose a rare disease to present on. I picked Ehlers-Danlos Syndrome—still considered rare at the time—and I devoured the literature. The 2017 diagnostic criteria had just been released. And I fit it.

So I found doctors who understood. I traveled to Mount Sinai. And I finally got my diagnosis.

I know I’m lucky. I have a big, supportive family and amazing friends who believed me. Since that day, the journey has only continued—unraveling the neurological pieces, the comorbidities, the daily challenges.

But I’ve come a long way. I’ve grown to acknowledge this for what it is: a disability. And saying that doesn’t make me weaker—it makes me stronger. I don’t let it define me, but I let it inform me. I use it as fuel to help others find answers faster than I did.

As years went on, I collected more diagnoses. Dysautonomia got more specific and I was diagnosed with POTS after passing out early on in grad school. I was threatened to be a “burden to a clinical site” and if I didn’t stabilize myself before clinical, I wouldn’t be able to keep moving forward in my graduate studies. SO I did. I found my answers. Documented and trialed medications until I was stable enough to then trial my own upright titration protocol, and rehabilitated myself to a place where I was able to go to clinical as scheduled. Because I was late to commit since my school had black balled me a little, I landed with an opening that had arisen late. Lo and behold- all of these years later, I still work with Strive Physical Therapy and run the largest EDS Special Interest Group in the tristate area with them. Everything happens for a reason.

Next was my MCAS diagnosis.

Then the spinal instabilities, including CCI and AAI. Then Chiari. I had a fusion and Chiari decompression neurosurgery in June 2023 and currently figuring out what I can do about this tethered cord. It’s been quite the rollercoaster.

My recovery from my neurosurgery was going fantastically for a few months! I was beating all the milestones. But as the tethered cord worsened, I have found myself back in a very hard stage right now. I can walk some days without a mobility aid! Most days I use forearm crutches outside the house and for something I really want to do but I know will set me into quite a flare (usually because of the seats for me actually), I bring my new wheels!