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I recently started playing parastanding tennis which lead me to your videos! I have Ehlers Danlos Syndrome and comorbidities like partial/occult Spina bifida and tethered cord like you! I also had some other EDS comorbidities like rotary Atlantoaxial dislocation, cranial cervical instability, and Chiari malformation. Unfortunately I wasn't correctly diagnosed until the age of 20 but two surgeries and 4 years later I am much better off now than I was before I got diagnosed. I also sometimes wonder what made me the way I am. I'm the only person in my family with EDS even though it typically follows an autosomal dominant inheritance pattern. Meaning I must either have an autosomal recessive form or I developed a random mutation by chance. I also have an able bodied fraternal twin and an able bodied little sister. Sometimes I wonder if I will ever get answers to all the whys. I'm hoping someday I'll be able to point to a gene and say "that gene is why I have EDS". It feels like without that I'm missing a piece of my own story.

Great video Jeff!!! You've definitely sewn the seed here in Australia with Nath and his campaign for Adaptive Standing Tennis and in Japan with Ken & Reiko (JASTA)

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Very well said, Jeff.

Awesome story. Moving testimony. Many (and I mean MANY) are in a similar boat in so many ways, not sure where to turn or what the best answer is. One thing I've learned are the politicians making the laws DEFINITELY don't get it. They look down from a mile in the sky (not understanding why people have pain or that there are thousands of people legitimately taking pain medication to continue LIVING somewhat of a normal life). These politicians are masters at grouping people into categories, thinking that they actually know what's best for them (even know they've never met them, know nothing about them or their history, and have never walked a day in their shoes). Thr doctor you spoke of who came in and told you "we don't treat pain" is an embarrassment to the medical industry. Isnt it a doctors job to help people feel better? Period. I had a similar encounter many years ago. That's when I lost pretty much ALL FAITH in doctors, their agenda, and the entire system. That includes the politicians making the laws. All in all, it's up to the individual to choose (and be able to choose) what's right for them. Someone who's never walked a day in your shoes; someone who knows nothing about you, your history, or why you take pain medication - they shouldnt be able to control your course of action and what you do. It's up to each individual to do what's best for them.

Wonderful story bro and I'm glad you shared with us

Jeff, I'm so sorry that you had to go through everything that you have been through. Thanks for sharing your story.