LGMD "SPOT IŞIĞI RÖPORTAJI"

İsim:      Hasan          YAŞ:   34 years old

Ülke:  Pakistan

LGMD Alt Tipi: Unknown

Kaç yaşında teşhis konuldu?:

I was diagnosed at the age of 19 years old

İlk belirtileriniz neydi?:

Started feeling pain and cramps, wadding walk, spinal curvature ….

LGMD hastası olan başka aile üyeleriniz var mı?

Yes, two sisters and one brother having this condition too

En büyük zorluklar olarak neleri görüyorsunuz? LGMD ile yaşamda:

Well, loosing independent life I think is the biggest challenges in my life. The main thing is that my country places are mostly not wheelchair friendly and people always think that I have polio. Still, I do think about old days when I used to do lots of things are now unable to do that really sucks to me.

People don’t understand your needs and requirements in my daily course of life. Therefore, we have to guide them.

En büyük başarınız nedir?:

In my point of view, I got a dream job now which I want to do in my life and now I love my job so much. I have started symptoms almost near to the completion of my studies. So, I think this is one the accomplishment in my life.

LGMD sizi nasıl etkiledi? Bugün olduğun kişi:

To be honestly speaking, it made me so much changed my entire life. I learnt a lot after diagnosis of this condition and have to accept it. One of the main elements in my life now is to have patient.

Dünyanın LGMD hakkında ne bilmesini istersiniz?:

Please try to understand our disease instead of judging us. Life is beautiful and we come once only. So, enjoy every day and don’t feel bad or down about you for what you’re.

Don’t hesitate to ask questions about us.

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

I want to go and see my immediate family members to surprise them that I can start walking again.

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