LGMD "スポットライト・インタビュー"

名称:  Ralph    年齢: 58 Yrs. Old

国名:   United States

LGMD サブタイプ  LGMD2L /  Anoctaminopathy

 

何歳で診断を受けたか:

I started having symptoms at age 47, back in 2006 and was diagnosed by 2011 when LGMD2L was discovered.

最初の症状は？:

Leg weakness. I was a big weightlifter and in my 30s had been bench pressing 300 pounds and squatting 400 pounds. But I felt weakness in my left leg and I went to the gym and tried to leg press with one leg at a time. My right leg was able to press 250 pounds but my left was lagging at 150 pounds.

ご家族にLGMDの方はいらっしゃいますか？

I have one brother confirmed with 2L. There may be others but we don’t know yet.

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？:

Getting around in all situations. Stairs are hard. Getting out of a chair is hard. Walking is doable but getting more difficult to do for longer distances. And falls always happen if knees buckle or you trip or slip.

あなたの最大の功績は何ですか？:

I have been doing a great deal of work in the disability arena, including currently being on the MDA National Community Advisory Committee and working with several other organizations while I also start the LGMD2L Foundation.

LGMDは今のあなたにどのような影響を与えていますか？

When you look at what I list as my greatest achievement you can tell that having LGMD2L has led me to work for so many people with disabilities of all types.

LGMDについて世界に知ってもらいたいことは？:

That we are getting closer and closer to some real treatments and cures and if we all work together, this achievement of possibly eradicating muscular dystrophy would help so many people and families, present and future.

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 would begin to work out again like in my youth and focus on building real strength and health while enjoying traveling and the beauties of the world.

 

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