INDIVIDUAL WITH LGMD: Fred

LGMD "스포트라이트 인터뷰"

이름:  Fred   나이: 36 yrs. old

국가: 미국

LGMD 하위 유형:  LGMD2A  / Calpainopathy

 

몇 살에 진단받으셨나요?:

I was diagnosed at the age of 13.

첫 증상은 무엇이었나요?:

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.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

아니요, 저뿐입니다.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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.

LGMD에 대해 전 세계에 알리고 싶은 내용:

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

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

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

 

* 더 많은 "LGMD 스포트라이트 인터뷰"를 읽거나 다음 인터뷰에 참여하려면 다음 웹 사이트를 방문하십시오. https://www.lgmd-info.org/spotlight-interviews