A Congenital bilateral perisylvian syndrome interview
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Do you already have a diagnosis? How long did it take you to get it?
It took 4 years of several disappointments and testing
For what medical specialties have you been treated? What has been the most useful specialty for your?
Brain MRI Blood work Urine sample
What has been the most useful thing for you so far?
Mayo clinic specialists
What have been your biggest difficulties?
Everyday struggles. I require 24/7 care from my mom
How has your social and family environment reacted? Have your social or family relationships changed?
My family and friends love me unconditionally
What things have you stopped doing?
Nothing
What do you think about the future?
It scares me alofhtly
So far, which years have been the best years in your life? What have you done during them?
Gone to school, met so many friends and therapists.
What would you like to do if you didn’t have your condition?
So much!
If you had to describe your life in a sentence, what would it be?
Loved
Finally, what advice would you give to a person in a similar situation?
Never give up
