Hi! I wanted to ask and see if anyone knows of any spaces for vascular ehlers danlos syndrome? Ive recently started posting on instagram but I would love to connect with others who are diagnosed with veds or even other eds subtypes!
Hi! I wanted to ask and see if anyone knows of any spaces for vascular ehlers danlos syndrome? Ive recently started posting on instagram but I would love to connect with others who are diagnosed with veds or even other eds subtypes!
Hi! I wanted to ask and see if anyone knows of any spaces for vascular ehlers danlos syndrome? Ive recently started posting on instagram but I would love to connect with others who are diagnosed with veds or even other eds subtypes!
Hi, I'm 18, and I have Vascular Ehlers Danlos Syndrome. I have struggled with bad physical and mental health my whole life. I have been diagnosed with autism, cptsd, gastropaersis, pots, and me/cfs.
My doctor thought I had Heds, so he sent me for testing. I never thought it would have been Veds, I hadn't even heard of it.
My life is full of sickness and pain, I try to stay positive but I don't know how anymore with this new information.
How do I accept this? How long does it take? How do I keep hope?
I want to find community, but it feels like theres no where to turn, how can I connect with others in this kind of situation?