04/30/2016  LGMD "Spotlight Röportajı"

 

İSİM:  Rebecca    YAŞ: 29 yaşında

ÜLKE:  Australia

LGMD Alt Tipi:   LGMD2A / Calpainopathy

 

Kaç yaşında teşhis konuldu?:

I was diagnosed with LGMD2A when I was 26 years old.

İlk belirtileriniz neydi?:

My first symptoms included:  difficult climbing stairs and inclines as well as not being able to rise without using my hands to me up.

LGMD hastası olan başka aile üyeleriniz var mı?

I am the only one out of 4.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

The greatest challenge for me is battling fatigue.  It can become really hard to find a balance between doing too much and not doing enough.  I have found that I’m adapting to change basically every year.  It is also a challenge to not be so hard on myself when I see others doing activities which I can’t do.  It can be challenging to ask for help when I cannot fulfill a task on my own.  Pain – I can’t remember the last time that I woke up and felt no pain, discomfort and feeling fragile.

En büyük başarınız nedir?:

My daughter is 10 years old and she is my greatest accomplishment.  I might not be good at some things in life but I can honestly say I’m the best Mum!  She is my life.  And, as she is growing up, she is starting to look after me in more ways than one.

LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?

I might be becoming physically weaker in my body but I have become stronger mentally.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

That is strips away everything that you know.

I also want them to know about Coalition to Cure Calpain 3 – the organization focused on finding a cure and treatment for LGMD2A.

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

If I was “cured” tomorrow, I would go out with my family with not limits.  I would run around with my daughter and climb 100 stairs.

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