INDIVIDUAL WITH LGMD: Shelley

09/08/2015

 

Nome:    Shelley    AGE:  50LGMD2A - Shelley T

PAESE:    Canada

Sottotipo LGMD:    LGMD2A / Calpainopathy

A che età è stata fatta la diagnosi:

Mi è stata diagnosticata all'età di 11 anni.

Quali sono stati i primi sintomi:

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

Avete altri familiari affetti da LGMD:

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

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.

Qual è il suo più grande risultato:

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.

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

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.

Cosa volete che il mondo sappia della 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.

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

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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