12/4/2015:

NAME:  Robert   나이: 71 yrs. old

국가: 캐나다

LGMD 하위 유형: Unknown

 

몇 살에 진단받으셨나요?:

I was diagnosed when I was 42 yrs. old.

첫 증상은 무엇이었나요?:

I did not walk until I was 24 months old.  As a child I could not run like others but it was believed at the time to be caused by asthma.  I have never been physically strong.

LGMD를 앓고 있는 다른 가족이 있나요?:  

Thankfully, no.  I am the only person in my family diagnosed with LGMD.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.

가장 큰 성과는 무엇인가요?:

My greatest accomplishment is  the friendships I have developed.  

LGMD가 현재의 자신을 만드는 데 어떤 영향을 미쳤나요?: 

I believe living with LGMD has taught me patience, organization, empathy for others, and humor.

LGMD에 대해 전 세계에 알리고 싶은 내용: 

As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical.   Not everyone is as fortunate as I to work a full career and be able to plan for retirement.  Please help to find a treatment or cure.

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

I want to go for a walk along the roads and in the fields and forest around my home community.    I have not done that in over 50 years ….. and I miss it.  Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 지원하려면 다음 웹사이트를 방문하세요(https://www.lgmd-info.org/spotlight-interviews).