- Fabry disease
- Interviews
Karlos Miguel's interview
How did all start?
After I had a pneumonia at 11, I had extreme pains on my feet and hands with changing weather, hot weather, excercise etc. I have to wear sandals since then. I had to go to the doctor for various illnesess before though.
Do you already have a diagnosis? How long did it take you to get it?
Yes, since I was 16. Took about 5 years from the big sympthoms like extreme pain, but obviusly it's been there since I was born.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Dermatology, cardiology and inner medicine. I think cardiology were the best doctors I had, even if they didn't have the most impact or decision making on the matter.
What have been your biggest difficulties?
Dealing with pain, not being able to find a job because of it, not having a really normal life (I cant be sure of when I have to rest, or when I will be able to do stuff).
How has your social and family environment reacted? Have your social or family relationships changed?
SInce I was always since I was born having problems, it's been a part of my life from the beggining, so no comment.
What things have you stopped doing?
I haven't stopped doing anything really, besides excercise. It's more like I have to really prepare for stuff, and still can't know for sure if the day I have to do it ill be able to, or will be ok.
What do you think about the future?
About how long will I live, if my suffering will worsen and how can I live if I dont find a job.
So far, which years have been the best years in your life? What have you done during them?
The last two, I got my partner which is really nice and attentive to me, and Im getting close to having a way to get sustenance for myself and get out of my parents house.
What would you like to do if you didn’t have your condition?
To be a racedriver, on any category or kind of race.
If you had to describe your life in a sentence, what would it be?
Get through pain, to see what's really important.
Finally, what advice would you give to a person in a similar situation?
Have patience and think on who really is there for you, who really sees you as you are. Someone who truly loves you (friend, family or partner, doesn't matter). Also, hobbies help a lot.
