Caregiving and ALS
·1 min
Familial ALS #
ALS, also known as Lou Gehrig’s disease, is a terminal neurodegenerative disease.
My family has been forever changed by ALS.
My grandmother (1995), mother (2019), uncle (2023) and aunt (2023) all passed away from familial ALS.
Familial ALS is a rare type of ALS. My family’s familial ALS can be detected by c9orf72 mutations. Familial ALS represents ~10% of ALS cases.
According to the CDC, there are approximately 30,000 cases of ALS in the United States.
ALS and Me #
Below is writing I’ve done about ALS and caregiving:
- Taking Care of Mom, the story of my journey with my mother’s familial ALS.
- Genetic Testing for Familial ALS, the story of me getting a genetic test for familial ALS.