LGMD "焦点访谈"

名称:  Ralph    年龄: 58 Yrs. Old

国家: 美国

LGMD 子类型：  LGMD2L /  Anoctaminopathy

 

您在几岁时被确诊:

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

您最初的症状是什么？:

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.

您是否有其他家庭成员患有 LGMD：

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

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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.

您最大的成就是什么？:

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 是如何影响您成为今天的自己的？

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.

您希望世界了解 LGMD 的哪些方面？:

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.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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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