LGMD "Spotlight Röportajı"

İsim:  Keisha  Yaş: 31 yrs. old

Ülke: Birleşik Devletler

LGMD Alt Tipi : Unknown

 

Kaç yaşında teşhis konuldu?:

I was diagnosed about 5 years ago at the age of 25-26.

İlk belirtileriniz neydi?:

I noticed that I was repeatedly falling and that my leg would give out without any warning.  I also recall that I was unable to raise my right arm unless I had assistance.

LGMD hastası olan başka aile üyeleriniz var mı?

So far, no one in my family has muscular dystrophy but I plan to have my parents tested to see if they are carriers.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

One of the greatest challenges is always having to plan ahead – if going out with friends or family to make sure the place is handicapped accessible.  Every day it also takes me longer to get dressed in the morning.

En büyük başarınız nedir?:

Coming to the fact that I have LGMD and still trying to figure out which form of LGMD.  And learning to embrace it.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

I feel LGMD has made me an unique individual helped me to bring awareness of the disease to others that don’t know much about it.  Having LGMD has helped me to become stronger and more independent.  I know that having LGMD is a part of me, I am human and still have my days just like anyone else.  I am a strong and proud woman with LGMD.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

LGMD is something that currently has no cure.  It is something that won’t go away.  Physical therapy and aquatic therapy help manage the disease.  Even with LGMD, we are still strong and can live a normal life just like anyone else.

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

If I could be cured tomorrow, I would want to run a marathon, run up and down the stairs, and take a big vacation somewhere to celebrate!

 

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