LGMD "ENTREVISTA EM DESTAQUE"

Nome:  Fred   Idade: 36 yrs. old

País: Estados Unidos

LGMD Sub-tipo:  LGMD2A  / Calpainopathy

 

Com que idade foi diagnosticado:

I was diagnosed at the age of 13.

Quais foram os seus primeiros sintomas:

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.

Tem outros familiares que sofrem de LGMD:

Não, eu sou o único.

Quais são, na sua opinião, os maiores desafios de viver com a 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.

Qual é a sua maior realização:

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.

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

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.

O que quer que o mundo saiba sobre a LGMD:

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

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

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

 

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