07/29/2015:

이름: Patricia  AGE:  26 yrs old

국가: 미국

LGMD 하위 유형: LGMD2A/척추통증증후군

 

몇 살에 진단을 받았습니까?:

I was diagnosed with MD when I was 12 years old.

첫 증상은 무엇이었나요?:

First symptoms were toe walking, arms not going straight, limping gait, and not gaining weight.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No one in my family has Muscular Dystrophy or LGMD.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenge is not being able to do certain things such as Walking, Running, Getting out of bed on my own, Bathing on my own, Cooking dinner, Playing with my nephew on the floor. Everything I do is a challenge.

가장 큰 성과는 무엇인가요?:

Greatest accomplishment would be getting married to a wonderful man and hopefully soon starting a family, also when I got my power chair and was able to cook dinner for the first time in 2 years, and being able to go outside with my husband.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

It has made me realize that even though I am limited on things I can do, with the right tools I can still do some of those things just in a different way.

세상이 LGMD에 대해 알았으면 하는 것:

Educate yourself on LGMD and some of the struggles people go through. Don’t judge someone on how they look. Every form of MD has a different look but that doesn’t make the person. their personality makes the person. If you see someone struggling whether in a wheelchair or walking offer to help, I know for me when someone asks if they can help me I am very grateful for it.

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

I would run as fast as I can down the road and around the block, I would jump up and down and maybe even do flips. I dream of the day I can do this.