LGMD “SPOTLIGHT INTERVIEW”  – 01/07/2016

이름: Janet   AGE:  33 yrs. old

국가: 미국

LGMD 하위 유형:   LGMD2B

 

몇 살에 진단을 받으셨나요?

I was originally misdiagnosed with Polymyositis at the age of 17.   Years later at the age of 28, I was diagnosed with LGMD2B.

첫 증상은 무엇이었나요?:

I started having difficulty climbing stairs, running, dancing and unable to play soccer as well as any other sports.

다른 가족 중에 LGMD를 가지고 있는 사람이 있나요?:

There is no family history of LGMD until me.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하십니까?:

Losing my independence has been very difficult. I am no longer able to walk long distances. I now need a power chair to move around. I am unable to independently care for my two children, 2 years old and 3 months old. I need someone to assist me in taking care of them.

가장 큰 성과는 무엇인가요?:

My greatest accomplishment has been accepting my disease. I mentally prepared myself for my transition to a power chair, where now things can be a little easier when I’m outside my home.

HOW HAS LGMD INFTUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

I have become a much stronger person. Despite the obstacles that come along with my condition, life goes on and I have and will make the best of it for myself and for my family.

세상이 LGMD에 대해 알았으면 하는 것:

It’s a rare disease, but it is out there and it’s important to raise awareness that can help find treatments and a cure.

IF YOUR LGMD COULD BE “CURED’,TOMORROW WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:

I would run towards my kids and lift them up into the air!

 

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