- Biotinidase Deficiency
- Interviews
Uncp's interview
How did all start?
This is not me with it I am not the person
Do you already have a diagnosis? How long did it take you to get it?
His genetics are back and re confirmed still in process he is 57 years old and has seemingly had these symptoms many years but it became profound for him in 2018
For what medical specialties have you been treated? What has been the most useful specialty for your?
He had Gastroparesis nothing really worked on any of these
Systemic Psoriatic Disease nothing really worked on any of these
yeast infections
What has been the most useful thing for you so far?
nothing
What have been your biggest difficulties?
cant find a doctor for the next step cannot find unbound biotin to purchase in USA
How has your social and family environment reacted? Have your social or family relationships changed?
He is disabled
What things have you stopped doing?
everything
What do you think about the future?
hope he will survive
So far, which years have been the best years in your life? What have you done during them?
He worked and had a family
What would you like to do if you didn’t have your condition?
He wishes he could drive again
If you had to describe your life in a sentence, what would it be?
He describes it as HELL
Finally, what advice would you give to a person in a similar situation?
get tested sooner find help and believe in yourself and your symptoms even when doctors tell you its "all in your head"
