A Congenital bilateral perisylvian syndrome interview .

A Congenital bilateral perisylvian syndrome interview


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

Interview Congenital bilateral perisylvian syndrome

Feb 17, 2020

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