- CASE FILE
Cadasil took my husband at age 65, and both my children inherited this incurable genetic disorder. This story needs to be told.
ABOUT THIS CASE FILE
The medical community is not aware of CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy), so misdiagnoses are the norm. CADASIL is an inherited disease of the blood vessels that occurs when the thickening of blood vessel walls blocks the flow of blood to the brain. Life expectancy is short. My husband was misdiagnosed for 20 years in which he suffered with strokes, headaches, nausea, abnormal behavior, and finally dementia that led to his death at age 65. Both of my children have this very rare, untreatable, and incurable genetic disorder that has already left them with brain damage--my son is 30 and my daughter is 35. The New York Times Magazine featured my family in Dr. Lisa Sanders' column "Diagnosis" in the May 2019 issue: https://www.nytimes.com/2019/05/01/magazine/symptoms-multiple-sclerosis-diagnosis.html. In the past when my husband or my children have seen doctors for their symptoms, we have had to bring Google printouts explaining this disorder because it is so rare.
The most critical element of this condition is that people are being misdiagnosed and then they have children. I only have two children, and they both got this disorder. They will most likely suffer an early death, as did my husband. It is critical that this information be shared with the world because too many people are living their lives with misdiagnoses. I don't care if you use my family's tragedy, but please get the word out about this terrible disease.