CADASIL Family Forum (since 2007)
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Posts: 1
My brother, 54, was recently diagnosed with CADASIL.  He had migraines in his 30's, depression, diagnosed with MS and then in October 2012 he had 2 strokes. 
  Our family is baffled.  There are 5 other brothers/sisters ages 55-66 and none of us have any signs.  Our parents are 92 and live independently.  No history of strokes in either side of the family.  Our paternal grandmother had a stroke at 100. 
How did this genetic disease sort of come out of nowhere?  Can he be the first in the family?   Any thoughts greatly appreciated.


Posts: 30

I hear you and feel sympathetic for you. I am in the same boat as you are. No family history, in fact no one into the great grand parents era has had a stroke in my family and I am gifted with  this horrible rare disease. only people I can blame is mankind... maybe some extraneous man made events that lead to mutation in my case. When and How I do not know?

But hey things happen.... Life goes on. One other thing you or your brother will notice is people around you will not care even if you go the length of explaining CADASIL. Has happened to me and I was baffled... does a disease mean I have to suffer and have signs of the disease and then a 3rd Party understands? what has this world come to ?

We are with you? You are at the right place.


Posts: 17
I wonder about this. If it hasn't shown up in either side of your respective families,
why have they called it CADASIL? Perhaps is it actually CARASIL which simply appears  to mean that it is a recessive gene. Very recessive in your cases.
Best of luck to all.

Heather Chepko-Albertson

Posts: 33
CADASIL is caused by a dominant gene. Although for me it now seems obvious that it came through my dad and his dad, neither ever had what was classified as a stroke--they lived before scans could examine what was going on in their brains--but both seemed to age while they were in their 50s and slow down remarkably. It was said, "The men in your dad's family died young," and that was the hint. Of course, like any genetic disease, the gene mutation can happen without any specific environmental cause or family history--it is just like one typo in many thousands of words, and that typo either goes way back in a family tree, occurred by chance recently, or first happened to you. Whatever the cause, I wish you and all of us the best.
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