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I don't know what to do.

Letmebeasecrettunnel October 28th, 2020
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I'm 15. I don't know what to do. I found out I might have hEDS. My joints have dislocated and swollen and hurt for almost 4 years and I know it was some sort of disability/chronic illness. I never thought it would be a form of EDS. I really don't know what to do. I know it doesn't change anything and my symptoms are still the same but it seems like it's not real. I don't know what to think but I'm starting to become depressed because of it.

2
Cuddleyworm October 28th, 2020
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@Letmebeasecrettunnel Sometimes it's hard for us to accept things like this. As you said you would've never imagine maybe having EDS. Although sometimes it's best you know, so you can know what to expect and know if there is a cure or not. I've been through something like this and I eventually got through it! I believe that you can try to get through this. I know that it's physical but it doesn't have to hurt you mentally.I believe you can eventually become happy again. I'm happy to help if you need someone to talk to

reservedBranch2784 April 22nd, 2021
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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