12/4/2015:

名称：  Robert   年龄: 71 yrs. old

国家:加拿大

LGMD 子类型: Unknown

 

您在几岁时被确诊:

I was diagnosed when I was 42 yrs. old.

您最初的症状是什么？:

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.

您是否有其他家庭成员患有 LGMD:  

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

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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

您最大的成就是什么？:

My greatest accomplishment is  the friendships I have developed.  

LGMD 是如何影响您成为今天的自己的？: 

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

您希望世界了解 LGMD 的哪些方面？: 

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.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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.

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