Published: 21/06/2023 Tags: Stories

An earlier diagnosis would have made a difference

Hi, I’m Rue! My journey began when I was 12 years old and I started having joint issues. My knees were aching and cracking and eventually, they started to dislocate.

For years doctors had no answers to what was happening. When I was 14/15 years old, my health really started to deteriorate and eventually, I was diagnosed with stage 3 high-risk NH t-cell lymphoblastic lymphoma.

During chemo, my muscles started to weaken significantly and my pain was unbearable. We now know that if I had an Ehlers-Danlos syndrome diagnosis then my treatment would have been handled differently.

I had two and a half years of chemotherapy and rang the bell at 17. After treatment, I had a lot of health issues that seemed strange. There was a missing puzzle piece and we had no idea what it was. Things started to click together slowly after my subluxations/dislocations worsened and my diagnoses started adding up.

Finally, my mom and I realized that most of my health issues were due to a corresponding issue – Ehlers-Danlos syndrome. We did tons of research and were absolutely certain that this was the piece we were missing.

After months of begging for testing, I saw a geneticist who ignored my own research and told me I didn’t have EDS. Many months later I was retested and this doctor agreed with my own findings and gave me an official diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). Seven years of dislocations, chronic pain, of weird symptoms that we couldn’t quite place; it all came together when I got the diagnosis in May 2021.

It’s now two years since diagnosis with EDS and I struggle a lot with comorbidities such as Chiari malformation, inappropriate sinus tachycardia, gastroparesis, chronic pain, migraines, and many more. But after major reconstructive surgery and lots of physical therapy, I am the strongest I’ve been in five years and am a full-time college student.

I spend my free time hanging out with my pets, going to concerts, and doing theater at my college. Maneuvering disabilities while living in a world not made for you has been very difficult, but I’m here and I’m working as hard as I can.

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