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hEDS and POTS

User Profile: norabell
norabell October 8th, 2023

Hello! I’m 16 and newly diagnosed with hypermobile Ehlers danlos syndrome and postural orthostatic tachycardia syndrome. I’ve been having a pretty difficult time and am looking for others going through similar things. I try to talk to my mom and therapist, but they just don’t know what it really feels like. I just really want to connect with others to try to feel less alone.

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User Profile: Tinywhisper11
Tinywhisper11 October 8th, 2023

@norabell I hear you ❤ and understands how isolating it can feel when we have disabilities😞 I'm lola, I'm disabled to but I'm different ways. I hope you find all the support you need and deserve here at cups ❤gives you a giant tiny hug ❤❤

User Profile: MartianGirl347
MartianGirl347 October 15th, 2023

@norabell

Hello fellow Zebra! I also have EDS and POTS. I was diagnosed back in 2020 at age 28. It gave me a sense of relief and dread all at once… it’s easy to feel defeated with this disability for various reasons, so I definitely understand. You’re not alone 😊

User Profile: space4peace
space4peace October 16th, 2023

I also deal with ED and just wanted you to know that you are not alone… I think it's natural to have anxiety around this condition.

best wishes…

User Profile: tearstruck
tearstruck January 24th

@norabell hey! I'm 16 as well! And I have chronic fatigue as well as circulation problems, digestive problems, and other symptoms. Was to be in year 11 last year but haven't been able to attend for the past year- hoping to enrol in a distance school or something for this year. How are you coping with school?