09/08/2015

 

İsim:    Shelley    AGE:  50

ÜLKE:    Canada

LGMD Alt Tipi:    LGMD2A / Calpainopathy

Kaç yaşında teşhis konuldu?:

Bana 11 yaşımda teşhis konuldu.

İlk belirtileriniz neydi?:

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

LGMD hastası olan başka aile üyeleriniz var mı?

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

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

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.

En büyük başarınız nedir?:

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.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

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.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

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.

LGMD hastalığınız yarın "tedavi edilebilseydi", yapmak isteyeceğiniz ilk şey ne olurdu?:

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!

Daha fazla "LGMD Spotlight Röportajı" okumak veya gelecek bir röportajda yer almak için gönüllü olmak için lütfen web sitemizi ziyaret edin: https://www.lgmd-info.org/spotlight-interviews