- Moyamoya
- Interviews
Sharon's interview
How did all start?
It all started when I was a child. I can remember being confused when I spoke. I would get made fun of because I stuttered sometimes. I wouldn't remember things for tests and struggled in school. Back then you just persevered through it there was no medication they gave you. It got worse in my 30's and 40's where the migraines, confusion, and loss of memory came in strong.
Do you already have a diagnosis? How long did it take you to get it?
Yes I have been diagnosed in January 2023 after a subarachnoid hemorrhage stroke in Asheville, NC. I had been asking for an MRI since the 1990's. So it took an extremely long time for me to get diagnosed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My primary doctors have been more helpful than any specialist.
What has been the most useful thing for you so far?
My family and topiramate which was prescribed to me in 2016 has warded off seizures all these years.
What have been your biggest difficulties?
Being paralyzed at times and the times I have the stroke like symptoms like with speech. Being someone who could talk to a room full of people to someone would not be able to make a sentence was very difficult.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has been very supportive which they have always been. I just posted my disease on my social media accounts and am getting the normal response.
What things have you stopped doing?
I have stopped drinking so many sodas and eating better. I have also been keeping my stress level down.
What do you think about the future?
I am hopeful with my upcoming surgery at Duke. I see my life totally changed. I saw death in the face and came out on the other side. I see things differently now. I am excited for the future with the things that could happen with the surgery. There is a possibility I will see better and so many other things that I have not been able to experience.
So far, which years have been the best years in your life? What have you done during them?
1991 was the best year of my life. I was blessed with a son that year and I felt good about life. I was a wife, a mother, a daughter and believed that everything was possible.
What would you like to do if you didn’t have your condition?
I would love to go back to work. I am not sure what type of work I'd like to do. I really think I would be good at helping people as a consultant of some kind. An advocate for people.
If you had to describe your life in a sentence, what would it be?
Struggles have been in my path though I have endured the obstacles I will fight to be the best person I can be for the people that need me.
Finally, what advice would you give to a person in a similar situation?
Don't let your doctors push you around and let you believe they know more about your body than you do. No one can understand what is going on in your body other than you. Explain in detail and don't hold back or be scared to tell them what you are experiencing.
