12/4/2015:

ИМЯ:  Robert   Возраст: 71 yrs. old

СТРАНА: Канада

LGMD Подтип: Unknown

 

В каком возрасте вам был поставлен диагноз:

I was diagnosed when I was 42 yrs. old.

Каковы были ваши первые симптомы:

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.

Есть ли у вас другие члены семьи, страдающие LGMD:  

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

Что, по вашему мнению, является наибольшей проблемой в жизни с LGMD:

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

Какое ваше самое большое достижение:

My greatest accomplishment is  the friendships I have developed.  

Как LGMD повлиял на то, что вы стали тем человеком, которым вы являетесь сегодня: 

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

Что вы хотите, чтобы мир узнал о LGMD: 

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.

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь:

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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