Mike Decoursey
Mike DeCoursey

Mike DeCoursey

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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

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The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.

About Staying Connected

Staying Connected is a podcast featuring the stories of people affected by Vascular Ehlers-Danlos Syndrome (VEDS). It is produced by Translucent One LLC.