Summary: CADASIL is a type of stroke disorder that can cause young onset dementia. Two web sites have been developed by women whose families are affected by the disease.
Billie Duncan-Smith’s husband Steve’s first symptom came when he was 38. He woke up with an excruciating headache, and started vomiting because the pain was so bad. Over the next few years, he would suffer many such migraines, some lasting for several weeks. An MRI of his brain showed a high number of white matter lesions, but Steve’s doctors weren’t sure what was causing his headaches.
Billie and Steve in 2004
While Steve suffered, Billie searched the internet and contacted medical experts all over the world. She sent his records and test results to those who offered to help. Finally, someone at the U.S. National Institutes of Health called her to suggest Steve might have CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy), a type of stroke disorder. Then a professor in France asked Billie to send Steve’s father’s medical records (he had died of a stroke) and to find someone to do the skin biopsy needed for diagnosis. Billie arranged all this. Three years after Steve’s first migraine, the professor in France, along with a doctor in the Netherlands, confirmed that Steve had CADASIL.
Four years after he was diagnosed, Steve had his first TIA (transient ischemic attack, a st ...
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