Mike DeCoursey was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2016 following the diagnosis of his son. The diagnosis came with an explanation for his father’s death at the age of 49 to a ruptured aortic aneurysm- something he had been told did not have a genetic cause. You can read more about his efforts to raise awareness and funds for VEDS at walkwithdeco.com.

There are a few support groups out there for people affected by VEDS, both through The VEDS Movement and the Ehlers-Danlos Society. You can find support groups through The VEDS Movement at thevedsmovement.org/supportgroups and through the Ehlers-Danlos Society through their website at Ehlers-Danlos.com. You can also reach the nurse at The VEDS Movement Help and Resource Center at thevedsmovement.org/ask