INDIVIDUAL WITH LGMD: Shelley

09/08/2015

 

Name:    Shelley    AGE:  50LGMD2A - Shelley T

LAND:    Canada

LGMD Unter-Typ:    LGMD2A / Calpainopathy

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

Die Diagnose wurde bei mir im Alter von 11 Jahren gestellt.

Was waren Ihre ersten Symptome?:

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

Haben Sie andere Familienmitglieder, die LGMD haben?

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

Was sind für Sie die größten Herausforderungen im Leben mit 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.

Was ist Ihre größte Errungenschaft?:

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.

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?

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.

Was möchten Sie der Welt über LGMD mitteilen?:

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.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

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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