Hello lovelies,
I'd like to talk about something really close to my heart right now. This Friday, February 28th is Rare Disease Day. It's a day of awareness sponsored by the National Organization of Rare Diseases.
Many people, myself included, have rare diseases -- diseases which affect fewer than 200,000 people are considered rare. I, as well as several other lovely Suicide Girls and members,...
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omerta_:
@trevor It's something I've talked to a number of doctors and physical therapists about and they all just shrug their shoulders at me. Since all of my pain problems have been directly related to my joint problems (in particular my knees, hips and spine) they just tell me to stay muscularly balanced, and if it hurts to take an anti-inflammatory and ice it if I need to. My bones are all fine, it's just that my ligaments are almost too long. But now that I have this info I might just go talk to someone new.
trevor:
@omerta_ Sounds a LOT like a lot of the conversations @sid and I have had with her doctors, and we had to see quite a few before we found one willing to dive in and investigate further. It just so happened that one specialist we encountered along the way was like "Oh hey, you present like someone with EDS, ever hear of it?" Building awareness is the best way to help others with the same struggles.
