LGMD "SPOT IŞIĞI RÖPORTAJI"

İsim:  Ralph    YAŞ: 58 Yrs. Old

Ülke: Birleşik Devletler

LGMD Alt Tip:  LGMD2L /  Anoctaminopathy

 

Kaç yaşında teşhis konuldu?:

I started having symptoms at age 47, back in 2006 and was diagnosed by 2011 when LGMD2L was discovered.

İlk belirtileriniz neydi?:

Leg weakness. I was a big weightlifter and in my 30s had been bench pressing 300 pounds and squatting 400 pounds. But I felt weakness in my left leg and I went to the gym and tried to leg press with one leg at a time. My right leg was able to press 250 pounds but my left was lagging at 150 pounds.

LGMD hastası olan başka aile üyeleriniz var mı?

I have one brother confirmed with 2L. There may be others but we don’t know yet.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

Getting around in all situations. Stairs are hard. Getting out of a chair is hard. Walking is doable but getting more difficult to do for longer distances. And falls always happen if knees buckle or you trip or slip.

En büyük başarınız nedir?:

I have been doing a great deal of work in the disability arena, including currently being on the MDA National Community Advisory Committee and working with several other organizations while I also start the LGMD2L Foundation.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

When you look at what I list as my greatest achievement you can tell that having LGMD2L has led me to work for so many people with disabilities of all types.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

That we are getting closer and closer to some real treatments and cures and if we all work together, this achievement of possibly eradicating muscular dystrophy would help so many people and families, present and future.

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

I would begin to work out again like in my youth and focus on building real strength and health while enjoying traveling and the beauties of the world.

 

* * * 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 

* * * LGMD konusunda farkındalık yaratmaya yardımcı olmak için lütfen bu gönderiyi BEĞENİN, YORUM YAPIN ve PAYLAŞIN!