After years of tests and guesswork, I was finally diagnosed with a genetic condition as well as an autoimmune disease. This was when my son was 4 years old. He is already showing signs of my genetic condition. Had I known of these diagnoses before trying to start a family, I would…
Yes! The resistance to anaesthetics is a big problem. I’ve woken up mid-procedure! Every time I need to be knocked out, I have to tell the doctors, nurses and various support staff that it takes almost double the amount to keep me under. Often they don’t believe me and later tell…
Got diagnosed with hEDS at 38 after being able to bend my fingers, hands and most other joints into weird positions since I was a child. I now have to wear a knee brace daily to avoid dozens of subluxations (almost dislocation but pops itself right back in) every day. It’s exhausting,…
I have horrible circulation in my feet and hands so they are always cold. Warm, fuzzy sleep socks are the only way I can fall asleep. If my feet are cold, there is no way I can sleep. I will just lie there in bed for hours until my feet warm up, no matter how exhausted I am. I stretch…
Something I learned after 25 years of having a period - Ehlers-Danlos type 3 (hypermobility) can cause all sorts of interesting menstrual issues. There are many medical articles published about this, but not many doctors are aware of the connection. If you’ve always been “double jointed”…
Or how about when your OBGYN goes on 18 months of maternity leave and when you call for your now late annual checkup you’re told that you need a new referral because you haven’t seen her in over 12 months 🙃
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