I don't know what to do.

I know you posted this quite some time ago, but I wanted to reach out and let you know that you are not alone. I wasn't diagnosed until I was 42 years old. I've had symptoms since I was born (club foot, hip dysplasia) but no one was putting it together as one underlying cause. I feel it's totally normal to go through a mourning process process when you find out you have something wrong with you that can't be cured, only managed. No one really has any good answers (like how the pain will progress, if you'll have further complications, etc). I personally felt like my body was a traitor. I still have days like that. Being frustrated comes with the territory. But don't let it become how you live your entire life. The good part of getting a diagnosis at your age is that you're more likely to get the care you need. I know it still sucks but you can do this. You've spent your whole life living with these messed up genes-now you just know WHY you have all these weird problems that other people your age don't seem to have. Hang in there