Q&A with Dr. Norris & Dr. Gensemer

Dr. Norris & Dr. Gensemer answer a few questions from the 2022 Canadian Ehlers Danlos Syndromes Conference.
Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022.
Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge, sharing resources, awareness, education, peer support, and research to find cures. Learn more at theilcfoundation.org

[@phyllisekdom9279]

Hello. Thank u for all u r doing. I don’t have genetic marker but have variant COL12A1. I was diagnosed w HEDS based on Brighton score. I also have aortic root dilation. Im 58. My father passed at 57 from aortic dissection. Geneticist doesn’t know cause of the heart issue. If u have volunteer opportunities to help get a better understanding, Im happy to donate blood or whatever

[@kathydobbs9850]

If HEDS is suspected and someone meets the criteria ,why are you recommending genetic testing?