edsupport

Hi everyone. Last week I received an official diagnosis for hEDS (and a few weeks before that I was diagnosed with dysautonomia, but I have to see a cardiologist and get a tilt table test to confirm that it's POTS).

I am 18, and I have been experiencing symptoms of hEDS for the past 5 years just thinking it was normal. I am constantly in pain, either in my joints, muscles, or sometimes in my bones. My joints crack all the time, and often it is painful. I am not sure if these painful crackings are always subluxations, but I am certain that my hips subluxate daily. A few weeks ago my hip came out of place and I couldn't get it back in for 3 hours. It hurt so bad I couldn't walk. I am really struggling to process this diagnosis. On the one hand, it is a relief to put a name to all these symptoms and to know that I am not crazy. On the other hand, being diagnosed means that this isn't something I am going to grow out of. I will always be like this. And that sucks. I feel very isolated and don't know who to talk to about this. My partner has been very supportive but I don't want to stress him out with all of my worries, and I really would like to talk to other people with EDS.

Ironically, I have been involved in the rare disease community for pretty much my entire life, because my dad has a rare autoimmune skin disease called pemphigoid. For the past 4 years, I have been going to an event called Rare Disease Week on Capitol Hill to advocate for federal legislation that will help rare disease patients. The first year I went there, I met a woman with EDS, and she told me about all of the symptoms and how it gets diagnosed. Right there, she performed the Beighton test for me, and I scored a 9/9. She said that was very strange, and this was right around the time when I first started experiencing chronic pain and joint cracking. I thought to myself in that moment, "Wouldn't it be crazy if I had this condition?" But I didn't tell anyone about it. And as the years went on and my symptoms got worse, I kept going to Rare Disease Week and meeting people with EDS. I would show them how my joints popped and moved, and they would say "You should see a doctor, you might have EDS." But I kept it to myself because I didn't think it was possible for me to have a rare disease when my dad already had one.

Even now that I have a diagnosis, I feel like I am making it up, like I just wanted to be part of the community so I invented this pain for myself. But I know that isn't true. I hurt so much every day. I know my joints subluxate (my hip is out of place as I am writing this). I know my skin is soft and fragile and scars easily, and I am completely hypermobile.

I guess I am in need of some support. I don't know what to do.

#EhlersDanlosSyndrome #edsupport #HypermobileEDS #HypermobileEhlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #RareDisease #RareDisorder