09/08/2015

 

Nombre:    Shelley    AGE:  50

PAÍS:    Canada

Subtipo LGMD:    LGMD2A / Calpainopathy

¿A qué edad le diagnosticaron:

Me lo diagnosticaron a los 11 años.

¿Cuáles fueron sus primeros síntomas?:

My first symptoms included walking on my tippy toes and difficulty climbing stairs.

¿Tiene otros familiares que padezcan LGMD?

Yes, all of my siblings are affected.  My sister Michele and brother John both have LGMD2A.

¿Cuáles crees que son los mayores retos de vivir con LGMD?:

One of the greatest challenges in my twenties was being physically weaker and unable to have children, childbirth and carrying the child.

It has also been challenging to find meaningful employment despite having a university and college degree.  Employers and employees refusing to understand the needs of having a disability has also been a challenge.

¿Cuál es su mayor logro?:

One of my greatest accomplishments has been writing my memoir about living with LGMD and helping others overcome their diversities.  Graduating from the university was also an accomplishment.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

I don’t take the things that I can do for granted.  I use my disability to educate others through my memoir and inspirational speaking.

¿Qué quiere que el mundo sepa sobre la LGMD?:

LGMD robs individuals of the strength in their voluntary muscles but does not affect their intellect.   Having a physical disability can be very frustrating, however being judged by others because of a disability can be far worse.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

I would put on a pair of figure skates and skate for hours.  When I was diagnosed 39 years ago, I had my heel cord tendons elongated (due to the development of contractures) and could no longer skate.  It broke my heart!

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