12/4/2015:

NOME:  Robert   Età: 71 yrs. old

PAESE: Canada

Sottotipo LGMD: Unknown

 

A che età è stata fatta la diagnosi:

I was diagnosed when I was 42 yrs. old.

Quali sono stati i primi sintomi:

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.

Ha altri familiari affetti da LGMD?:  

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

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?:

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

Qual è il suo più grande risultato:

My greatest accomplishment is  the friendships I have developed.  

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi: 

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

Cosa volete che il mondo sappia della 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.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

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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