Happy Rare Disease Day - From Lael - one of our amazing Access Panel
Many of you who know me are aware that I've always had problems with my knee coming out and having to put it back in, accompanied by pain. This started when I was little, and I was told multiple times that there was nothing wrong and that it was all in my head. I actually accepted this and thought nothing of it, but I'm still dealing with the pain and my knee coming out. I thought it was normal and just part of my makeup.
When I reached my twenties, it started getting worse. I'd heard of a condition called EDS (Ehlers-Danlos Syndrome), and I was sure I had it. They referred me for an X-ray, and it was found that my knee was indeed higher than it should be. I hadn't known this before, as I'd never had X-rays on my knee before.
I received a letter saying they had denied me in June 2024, but then I had a six-day episode where my knee was out in November 2014, so I went to the hospital. They took some X-rays and sent me to orthopaedic again, and this time I was accepted.
It's been a year and some months of testing, having more X-rays and MRIs on my knee. At the same time, I hurt my ankle, so I was put in a moon boot as i had my torn ligament. I've been referred for genetic testing, as my surgeon is sure I have EDS my score was 7/9. I'm still dealing with pain every day; it's constant. There are days I feel drained just from the pain, it's my ankle and knee pain.
The surgeon told me they could do surgery, but because of my EDS, it probably wouldn't work. Sadly, it could cause more pain, and just one bump could undo all the surgery. I do feel angry that this wasn't picked up when I was little, and it's a lot to process.
I'll most likely have to wear a brace all the time, as it's now coming out weekly. iv also now been referred for my ankle to the orthopaedic to but could be the same as my knee.
I'm happy I have a lovely family that loves me and knows how much pain I'm in most of the time. I also have friends with EDS, and I should feel happy that I can walk and do many things they can't. But it still hurts to deal with this, and sometimes I feel like I don't know what my purpose is with this."
@Lael Marshall