Living with Vascular Ehlers-Danlos

The On-Air Advocate

As we continue our VEDS Series, I am so excited to welcome, Meg & Zoe. Meg is a 41 year old mother, wife, registered nurse, and patient living with Vascular type Ehlers-Danlos syndrome (vEDS). Meg was diagnosed with the condition after several years of seeking answers for medical issues including multiple aneurysms. Meg's parents tested negative for vEDS, however her two children were found to have inherited the condition from her. Meg now works as the clinical nurse navigator for the Hoag Marfan Syndrome & Related Conditions program in Newport Beach, CA where she has focused her nursing career as an advocate for patients and families fighting rare cardiovascular connective tissue disorders. Meg and her husband, Brian, live in Southern California and make a blended family of six with Tommy (age 11), Zoe (age 11), Ben (age 9) and Izaak (age 5). Zoe is Meg's 11 year old daughter, also living with (vEDS). Zoe was diagnosed shortly after Meg at the age of 5. While Zoe's own clinical manifestations of vEDS have been subtle, the impact of vEDS still looms in background. Having now lived more than half her life knowing she has this condition, Zoe offers a unique perspective on living with vEDS as she transitions into young adulthood. Listen in as Meg & Zoe share their personal story and journey of living with Vascular Ehlers-Danlos. Learn More About VEDS at : https://www.thevedsmovement.org Learn More About The On-Air Advocate at: https://www.onairadvocate.com also check out our latest blog 11 Quick Tips For Traveling With A Chronic Illness :https://mailchi.mp/d0058c8413c4/travelingwithchronicillness