@@JordanJSparks other than the chronic pain that my EDS causes me and I think I am showing signs of Dysautonomia and POTS which I am going to discuss with my doctor or Cardiologist. But other than that, I’m doing ok.
@@JordanJSparks Your skin is quite strechy. I would say too much for hEDS. Maybe you have the classical type of EDS. If it s the case, you should ask to have genetic test done. As the genes are known. No a doctor, just a fellow EDS ;)
@@princeloup5093I have been trying to see a genetic counsellor for years. I’ve seen so many rheumatologists but they dismiss my stretchy skin, ocular issues, autonomic dysfunction etc. i have a 9/9 Beighton score, hernias, dislocations etc and they say it’s nothing. Even paid for my own genetic testing but not taking the results seriously. I can back with variants associated with dermatospraxic and perdiodontal EDS as well as Loeys Dietz and Marfan so need someone qualified to interpret the data
@@shannongreenwell1278hEDs is very often associated with chiari malformation, if you haven't had an MRI of your head done, I highly recommend having one done, especially if you have frequent headaches. Chiari was actually what lead to my POTs and hEDs diagnosis
I have EDS, mine is the Classical type. I have stretchy skin on my neck behind my ears, on my hands and my upper arms.
I have all that too! Still no diagnosis though. Hope you are okay!
@@JordanJSparks other than the chronic pain that my EDS causes me and I think I am showing signs of Dysautonomia and POTS which I am going to discuss with my doctor or Cardiologist. But other than that, I’m doing ok.
@@JordanJSparks Your skin is quite strechy. I would say too much for hEDS. Maybe you have the classical type of EDS. If it s the case, you should ask to have genetic test done. As the genes are known. No a doctor, just a fellow EDS ;)
@@princeloup5093I have been trying to see a genetic counsellor for years. I’ve seen so many rheumatologists but they dismiss my stretchy skin, ocular issues, autonomic dysfunction etc. i have a 9/9 Beighton score, hernias, dislocations etc and they say it’s nothing. Even paid for my own genetic testing but not taking the results seriously. I can back with variants associated with dermatospraxic and perdiodontal EDS as well as Loeys Dietz and Marfan so need someone qualified to interpret the data
@@shannongreenwell1278hEDs is very often associated with chiari malformation, if you haven't had an MRI of your head done, I highly recommend having one done, especially if you have frequent headaches. Chiari was actually what lead to my POTs and hEDs diagnosis