12/4/2015:

名前  Robert   年齢: 71 yrs. old

国名:カナダ

LGMDサブタイプ: Unknown

 

何歳で診断を受けたか:

I was diagnosed when I was 42 yrs. old.

最初の症状は？:

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.

LGMDを患っている家族が他にいますか？:  

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

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

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

あなたの最大の功績は何ですか？:

My greatest accomplishment is  the friendships I have developed.  

LGMDは、今のあなたにどのような影響を与えたのですか？: 

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

LGMDについて世界に知ってもらいたいことは？: 

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.

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか？:

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.

LGMDスポットライト・インタビュー」をもっと読みたい方、または今後のインタビューに志願したい方は、ウェブサイトhttps://www.lgmd-info.org/spotlight-interviews。