CarsonD's interview
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How did all start?
Both of my parents carry the gene for Phenylketonuria and I randomly ended up with PKU
Do you already have a diagnosis? How long did it take you to get it?
I got my heel poked when I was born and a few days later the hospital told my mom I had PKU
For what medical specialties have you been treated? What has been the most useful specialty for your?
Highly monitored low protein medical diet
What has been the most useful thing for you so far?
My provincial healthcare covering more and more low protein medical foods, making it more affordable for me to stay on diet
What have been your biggest difficulties?
Learning about and understanding sneaking food and the consequences that can come from it
How has your social and family environment reacted? Have your social or family relationships changed?
Sometimes people ask me about why my food is being weighed, but otherwise people are always supportive of me
What things have you stopped doing?
I have stopped sneaking food and not telling my mom's. Instead I ask for things and we work together for me to eat more of the foods I want to and keep track of my PHE and look after my brain
What do you think about the future?
I'm excited about new things coming when I'm older, like gene therapy and gene replacemnt. A cure would be so exciting!
So far, which years have been the best years in your life? What have you done during them?
The present is the best because I'm learning how to do my diet more on my own instead of my mom's just always doing it all for me
What would you like to do if you didn’t have your condition?
Be able to eat anything I want and be able to just eat it right away and not have to weigh it
If you had to describe your life in a sentence, what would it be?
I'm just normal, but sometimes it's hard and I feel left out
Finally, what advice would you give to a person in a similar situation?
Try not to think of it as a diet. It's a lifestyle to be your best self!
