12/10/2015

이름:  Michal   AGE: 35 yrs. old

국가: Poland

LGMD 하위 유형: Unknown

 

몇 살에 진단받으셨나요?:

I was diagnosed when I was 25 years old.

첫 증상은 무엇이었나요?:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

NO , I’m the only person in my family who has this disease.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

가장 큰 성과는 무엇인가요?:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I have become more insensitive to pain and I’m not fearful of any challenges

LGMD에 대해 전 세계에 알리고 싶은 내용:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

I think if I were cure tomorrow, I would run and do everything I never could do!

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  https://www.lgmd-info.org/spotlight-interviews