Conversations With Professionals: Vascular Ehlers-Danlos Syndrome (vEDS) - 2022

Vascular Ehlers-Danlos syndrome (vEDS) is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax.

President for The Ehlers-Danlos Society, Lara Bloom, speaks with Dr. Sherene Shalhub in the USA, and Dr. Michael Frank in France, about vascular Ehlers-Danlos syndrome (vEDS), genetic testing, monitoring, and treatment protocols in both countries.

Timestamps:

02:04 In the USA and France, what is it like for those living with vEDS in terms of getting a diagnosis and treatment?

04:56 In your country, what does the usual team of specialists look like for someone with vEDS?

08:29 What is the current treatment protocol for someone with vEDS in both France and the USA?

18:20 What mental health support do you think should be offered to people diagnosed with vEDS?

21:35 When should someone seek genetic testing for a diagnosis of vEDS?

28:06 When are symptoms more indicative of vEDS than other conditions, such as bleeding disorders?

31:09 Are there any medications to avoid when living with vEDS?

35:35 If someone does not have vEDS experts local to them, what should they do?

43:14 Are there any activities to avoid when living with vEDS?

44:27 What is the best way healthcare professionals can work together for their patients with vEDS?

47:20 What is your one wish for vEDS and the vEDS community?