Age 21 at diagnosis of CADASIL
My Life with CADASIL
Life with CADASIL is a hard, painful and sometimes lonely battle. I struggle every day with headaches, some of them excruciating. I have dealt with them since I was nine. The hardest thing is moving on with my daily activity. Being a person who had a great memory at one time, I now find myself losing items on a daily basis. Notebooks, memory pads, and sticky notes help for now with my memory issues. But it is fading, it seems, with each excruciating headache. I work through the pain. I maintain a full time job in between several doctor’s visits each month. Counseling, neurologist, eye doctor, etc. are monthly visits for me. I have to inform every person I come in contact with about my rare disease. I seem to drift from family and friends because of the somewhat hardships I have to go through. I live my life. But in the back of my mind I know I have already had two strokes before age 21, and my memory is fading so it’s only a matter of time before it gets worse.
This story was originally contributed and shared in the March 2013 issue of EMBRACE newsletter published by CADASIL Association. Thank you Courtney for sharing your story with others, a wonderful way to advocate.