09/08/2015

 

Nom:    Shelley    AGE:  50

PAYS:    Canada

LGMD Sous-type:    LGMD2A / Calpainopathy

À quel âge avez-vous été diagnostiqué ?:

J'ai été diagnostiquée à l'âge de 11 ans.

Quels ont été vos premiers symptômes ?:

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

Avez-vous d'autres membres de votre famille atteints de LGMD ?

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

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le 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.

Quelle est votre plus grande réussite ?:

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.

Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?

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.

Que voulez-vous que le monde sache sur le 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 votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?:

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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