04/08/2016 – LGMD “Spotlight Interview”

İSİM:  Mary   Yaş: 46

ÜLKE: Birleşik Devletler

LGMD Alt Tipi: LGMD2A / Calpainopathy

 

Kaç yaşında teşhis konuldu?:

I was diagnosed with LGMD when I was 25 years old.

İlk belirtileriniz neydi?:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

LGMD hastası olan başka aile üyeleriniz var mı?

No, I am the only family member to ever be diagnosed with LGMD.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

En büyük başarınız nedir?:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

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

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

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