Staying Connected

Staying Connected


Lise Voje-Johanson

November 06, 2021

Lise Voje-Johanson’s daughter, Karna, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) when she was 8 years old in 2019, after her father, Trond, was diagnosed. Lise shares her experience getting and coping with Karna’s diagnosis, as well as information about the medical system in Norway. 



This podcast episode is dedicated to Trond, who lost his life to VEDS on October 16, 2021, after the recording of this interview.



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!