12/4/2015:

ADI:  Robert   Yaş: 71 yrs. old

ÜLKE: Kanada

LGMD Alt Tipi: Unknown

 

Kaç yaşında teşhis konuldu?:

I was diagnosed when I was 42 yrs. old.

İlk belirtileriniz neydi?:

I did not walk until I was 24 months old.  As a child I could not run like others but it was believed at the time to be caused by asthma.  I have never been physically strong.

LGMD hastası olan başka aile üyeleriniz var mı?:  

Thankfully, no.  I am the only person in my family diagnosed with LGMD.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.

En büyük başarınız nedir?:

My greatest accomplishment is  the friendships I have developed.  

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?: 

I believe living with LGMD has taught me patience, organization, empathy for others, and humor.

Dünyanın LGMD hakkında ne bilmesini istersiniz?: 

As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical.   Not everyone is as fortunate as I to work a full career and be able to plan for retirement.  Please help to find a treatment or cure.

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

I want to go for a walk along the roads and in the fields and forest around my home community.    I have not done that in over 50 years ….. and I miss it.  Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.

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