INDIVIDUAL WITH LGMD: Robert
12/4/2015:
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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