Familial cerebral cavernous malformation

PodcastDX

Apr 26 2022 • 49 mins


This week we're talking about FCCM or, Familial cerebral cavernous malformation, with Megan.   [FCCM is] ..." a rare, capillary-venous malformations characterized by closely clustered irregular dilated capillaries that can be asymptomatic or that can cause variable neurological manifestations such as seizures, non-specific headaches, progressive or transient focal neurologic deficits, and/or cerebral hemorrhages". (credits: GARD)

Megan is a mom to twins — identical 17-year-old girls — and a 13-year-old son. She, her husband, and kids live just outside of Phoenix. She is a writer, caregiver, and mom.

Maybe most importantly, Megan is also an advocate for rare diseases and rare disease parenting.

She is currently the chair to the Arizona Angioma Community Alliance in her “free” time. Follow her on Facebook , Instagram, or Twitter or her brand new website meganloden.com