Cathy Bowen tells us about her son, David Daniel Bowen III, and the colostomy reversal that ultimately took his life in 1996 at the age of 14, due to medical mismanagement and the hospital’s lack of knowledge about Vascular Ehlers-Danlos Syndrome (VEDS). Dave’s death left Cathy an empty shell, and she dealt with his loss by putting the love she had for her son towards others with VEDS. She had also made Dave a promise, that this would be her lifelong mission. Shortly after his death, she started advocating for people with VEDS with other mothers. She worked with the EDS National Foundation (now known as the EDS Society) and opened a local branch in New Jersey.  A few years later she co-founded EDS Today, which began as a newsletter for people in the EDS community sharing news and publications about all types of EDS. She was also a member of the original VEDS yahoo email support group back in 1996, which is now the VEDS Facebook group.

Read more about Dave and Cathy’s story, and the Bowen story, here: http://edstoday.org/david-daniel-bowen-iii/

You can also read Dave’s poem, which was read on this podcast, here: https://fibromusculardysplasia.blogspot.com/2013/12/today-i-want-to-share-with-you.html

Find more information about the VEDS Collaborative Natural History Study and enroll at https://redcap.iths.org/surveys/?s=LTWWDAC3XJ

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!

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.