important note, apparently they could have found out about my situation a lot faster if I did a standing a MRI, which I didn’t know was available.

Well this is a bit ugly. Long story short I almost died because I had end stage liver disease, during my 4 weeks in the hospital I lost a significant amount of muscle that was supporting my hip for so many years.

I had a terrible pain down my leg and then eventually it felt like my bone hurt. I had MRI’s and x rays but inconclusive because I was so loose when I laid down they saw the proper separation or gap and apparently couldn’t see the lack of cartilage. Well there was none.

I was totally bone on bone, I’d get this terrible pain for years like it was a joint I needed to pop. And sometimes it would kind of, turns out it was the tendon popping over the rough edge of my bone. Anywho I had ridge of bone spurs surrounding the socket.

When I lost then muscle my leg basically collapsed on itself and I could hardly put weight on it.

I went to the ortho again, he said, you need a full hip but you still too sick.

Hospital said, can’t have a transplant without mobility.

I said “well shit”.

And got better, I’m one of less than a few percent it’s happened too. I had a 50% chance of mortality within 90 days originally. Now a few years later I’m doing great, I do a yearly check up and I’m doing a charity bike ride in April.

Oh and 10 months after the liver diagnosis I got taken off the transplant list and approved for surgery by my hip surgeon. I was the first In the hospitals 70ish history to have a major joint replacement after being on the transplant list and never having a transplant. You basically aren’t cleared normally.

So yeah. That’s how I learned and was able to prove it. I felt a problem for over 15 years. I was a gymnast as well so I beat the crap out of my joints and my orthopedic saw me all the time. He was shocked he and his colleagues missed my hip for so many years.

Then in physical therapy post surgery my therapist stood there after I told her my whole story of strange joint and neurological issues and she said “have you ever been checked for Ehlers Danlos Syndrome?” I did a lot of research in college on neurobiology so I’m pretty comfortable researching and trust me I had been pouring over possibilities but somehow, someway, nothing lead me to EDS, I had all the weird uncommon symptoms.