I was diagnosed by a Geneticist on the NHS. I’m actually the first in my family to receive a hEDS diagnosis. It’s come from my dads side of the family. All the females before me though had Scleroderma/Raynauds or Rheumatoid (if not familiar with Scleroderma, it’s a rare disease causing a thickening and tightening of skin and connective tissue, basically complete opposite of EDS) all the males have Dupuytrens Contracture. Lots of of dodgy collagen going on there!! How those genes have mutated into EDS for me is something I’ll never understand, the geneticist was rather bewildered too and shocked that my EDS had been missed for nearly 30 years, especially with that family history. Would be really interested to find out if anyone out there has similar family history?

Posted by Deleted (8cc3ae43) at 2022-01-27 17:02:35 UTC