Ashley Rose Marisch was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2017, after previously being diagnosed with FMD, or fibromuscular dysplasia. Her sister, Allyson Jane, ultimately continued researching their family’s experience and history and pushed for the genetic testing for VEDS that led to Ashley Rose, Allyson Jane, and their mother, Dawn, to be diagnosed. Allyson Jane passed away in 2020 of a ruptured aortic dissection. In this episode, Ashley Rose shares her experience getting diagnosed, and how she copes with the diagnosis and the loss of her sister.
Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation. Find the full disclaimer at translucentone.blog.
If you would like to share your story with VEDS on this podcast, visit https://translucentone.blog/contact/. I look forward to hearing from you!