INDIVIDUAL WITH LGMD: Shelley

09/08/2015

 

Name:    Shelley    AGE:  50LGMD2A - Shelley T

COUNTRY:    Canada

LGMD Sub-Type:    LGMD2A / Calpainopathy

At what age were you diagnosed:

I was diagnosed at the age of 11.

What were your first symptoms:

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

Do you have other family members who have LGMD:

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

What do you find to be the greatest challenges in living with 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.

What is your greatest accomplishment:

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.

How has LGMD influenced you into becoming the person you are today:

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.

What do you want the world to know about 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.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

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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