Morgan Boreen's interview
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How did all start?
At 6 months I would be jumping in my jolly jumper at stop suddenly I would look scared and then burp It took 3 months to be diagnosed with a seizure disorder
Do you already have a diagnosis? How long did it take you to get it?
It took 18 years to be diagnosed with STXBP1 and many tests which came back negative
For what medical specialties have you been treated? What has been the most useful specialty for your?
Seizures and scoliosis surgery for my back as a result of sitting in my wheelchair all the time and hypo and hyper muscular tension
What has been the most useful thing for you so far?
Full spinal fusion
What have been your biggest difficulties?
Trying to get the right balance of medications and getting funding for help in all areas
How has your social and family environment reacted? Have your social or family relationships changed?
It’s all I know but my brother and mum have been my main support system
What things have you stopped doing?
I am 100 percent dependent on others in all areas of my life
What do you think about the future?
I cannot express that as I cannot communicate
So far, which years have been the best years in your life? What have you done during them?
All
What would you like to do if you didn’t have your condition?
Na
If you had to describe your life in a sentence, what would it be?
Dependant
Finally, what advice would you give to a person in a similar situation?
Na
