INDIVIDUAL WITH LGMD: Robert
12/4/2015:
NOMBRE: Robert Edad: 71 yrs. old
PAÍS: Canadá
Subtipo LGMD: Unknown
¿A qué edad le diagnosticaron:
I was diagnosed when I was 42 yrs. old.
¿Cuáles fueron sus primeros síntomas?:
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.
¿Tiene otros familiares con LGMD?:
Thankfully, no. I am the only person in my family diagnosed with LGMD.
¿Cuáles crees que son los mayores retos de vivir con LGMD?:
One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.
¿Cuál es su mayor logro?:
My greatest accomplishment is the friendships I have developed.
¿Cómo te ha influido la LGMD para convertirte en la persona que eres hoy?:
I believe living with LGMD has taught me patience, organization, empathy for others, and humor.
¿Qué quiere que el mundo sepa sobre la 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.
Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:
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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