OSOBA Z LGMD: Fred
LGMD "WYWIAD W ŚWIETLE REFLEKTORÓW"
Kraj: Stany Zjednoczone
Podtyp LGMD: LGMD2A / Calpainopathy
W jakim wieku zostałeś zdiagnozowany?:
Zdiagnozowano mnie w wieku 13 lat.
Jakie były pierwsze objawy?:
Looking back I was always slightly slower than the other kids but I can’t say there was one symptom which my parents or I noticed. I was diagnosed on a fluke. I had gone skiing with a church group and ultimately broke my leg. When I went to the hospital emergency room for my broken leg, a Dr noticed that I was not as strong as I should have been at that age. That resulted in a muscle biopsy. Initially, I was diagnosed with Becker’s MD, this was all pre-DNA testing.
Czy masz innych członków rodziny cierpiących na LGMD?
Nie, jestem jedyny.
Co uważasz za największe wyzwanie w życiu z LGMD?:
The greatest challenge for me is not being able to hold my 7-month old without assistance. Constantly having to advocate for me as it pertains to this condition. I never noticed how many people have “ableist” attitudes. The last for me would be not being able to freely visit friends and family.
Jakie jest twoje największe osiągnięcie?:
I have so many accomplishments, but if I could only choose one I’d say working my way off of SSI. After my diagnosis, I had given up hope of ever having a job, a car, a home, a family of my own etc. Today, I am a state police dispatcher, I drive, I have a beautiful family, I’m currently looking to purchase my first home, and I’m optimistic that when the time comes and I no longer can physically do the job I have that God will provide another opportunity.
Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj:
LGMD has taught me how to fight for what I want. It’s taught me that I’m never as limited as I may think. Anything is possible.
Co chciałbyś, aby świat dowiedział się o LGMD?:
That LGMD has not been cured yet but, with their help, it can be.
Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?:
Pick my little boy up, give him a tight hug, toss him up in the air and catch him.
* * * Aby przeczytać więcej wywiadów "LGMD Spotlight Interviews" lub zgłosić się na ochotnika do udziału w nadchodzącym wywiadzie, odwiedź naszą stronę internetową pod adresem https://www.lgmd-info.org/spotlight-interviews