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.
The On-Air Advocate podcast provides education, advocacy and supportĀ for special needs parents, caregivers, those with disabilities and complex medical conditions.