LGMD "SPOTLIGHT INTERVIEW"

Nom:  Fred   L'âge: 36 yrs. old

Pays: États-Unis

LGMD Sous-type:  LGMD2A  / Calpainopathy

 

À quel âge avez-vous été diagnostiqué ?:

J'ai été diagnostiquée à l'âge de 13 ans.

Quels ont été vos premiers symptômes ?:

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.

Avez-vous d'autres membres de votre famille atteints de LGMD ?

Non, je suis le seul.

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le 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.

Quelle est votre plus grande réussite ?:

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.

Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?

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.

Que voulez-vous que le monde sache sur le LGMD ?:

That LGMD has not been cured yet but, with their help, it can be.

Si votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?:

Pick my little boy up, give him a tight hug, toss him up in the air and catch him.

 

* Pour lire d'autres "LGMD Spotlight Interviews" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web à l'adresse suivante https://www.lgmd-info.org/spotlight-interviews