A STXBP1 interview .

Elizabeth's interview


How did all start?

seizures at 10 hours old.

Do you already have a diagnosis? How long did it take you to get it?

it took us 12 years to get a diagnosis

For what medical specialties have you been treated? What has been the most useful specialty for your?

gastroenterology, neurology, surgery, PT, OT, and speech

So far, which years have been the best years in your life? What have you done during them?

ages 7 to 12 were her best years.

If you had to describe your life in a sentence, what would it be?

a struggle. constant medical intervention for her.

Finally, what advice would you give to a person in a similar situation?

enjoy your child. just enjoy them

Interview STXBP1

Jul 9, 2018

By: Elizabeth

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