By Onawu, CADASIL, United States, August 3, 2019
To be honest, I feel like an alien because I have had 8 incidents since 2016. Thank God I have no brain damage. I have been told
that my problems are complicated. I was finaly diagnosed with cadasil in 2017. Apparently my mother who is 80 years old has the same gene defect (the notch 3 gene disorder). I am 65 years old. I am African American. Yes, frustration comes when I have to go to the Emergency room and doctors never heard of this condition and cannot grasp this disease until I mention the name cadasil and they have a puzzled look on their faces when I tell them this is causing my systems. Afterwards they find after looking it up, that I was not making it up. Of course they only know to tell me keep taking my blood pressure medication and come in to emergency when the incidents happen again to make sure the incident was not a stroke. I pray for more research and a cure. I hope that I did not pass it on to my grandchildren.