INDIVIDUAL WITH LGMD: Shelley

09/08/2015

 

Nome:    Shelley    AGE:  50LGMD2A - Shelley T

PAÍS:    Canada

LGMD Sub-tipo:    LGMD2A / Calpainopathy

Com que idade foi diagnosticado:

I was diagnosed at the age of 11.

Quais foram os seus primeiros sintomas:

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

Tem outros familiares que sofrem de LGMD:

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

Quais são, na sua opinião, os maiores desafios de viver com a 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 é a sua maior realização:

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.

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

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.

O que quer que o mundo saiba sobre a 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 a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

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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