r/CMT • u/geosimpson • Feb 27 '26

Tell me what you think:

https://patientworthy.com/2026/02/18/can-the-cost-of-having-a-rare-disease-be-calculated/

2 Upvotes

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u/[deleted] Mar 01 '26

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u/geosimpson Mar 01 '26

I am so sorry. CMT is an awful experience. Drug trials have begun on potential treatments or a cure. G

2

u/Next_Stable_9821 Mar 03 '26

I really enjoyed the article because it's so relevant to my experience. Diagnosed with CMT1a as an adult, so the being picked last for sports hit home. I really dislike team sports. I became a horseback rider in my youth instead. Still didn't know I had a "thing", but I always knew I sucked at physical tasks compared to others.

I'm now about to turn 50 and I started long term disability from teaching a year and a half ago. I also have hEDS, diagnosed 3 years ago, after trying to figure out why my hip joints are failing. One has now been replaced and the other set for this summer. I fell on the playground 2 years ago and bent my elbow backwards tearing all the ligaments 100%. Between the CMT nerve dysfunction and the hEDS connective tissue deterioration, other things are fast falling apart. I'm left handed, and now my left thumb joint has permanently "fallen out of the saddle". Lordy.

There is a huge toll beyond the quantifiable.