07/29/2015:

名前: Patricia  年齢:  26 yrs old

国名:アメリカ

LGMDサブタイプ: LGMD2A / カルパイン障害

 

何歳で診断されたか:

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

最初の症状は？:

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

ご家族にLGMDの方がいらっしゃいますか？

No one in my family has Muscular Dystrophy or LGMD.

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

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.

あなたの最大の功績は何ですか:

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.

LGMDは今のあなたにどのような影響を与えていますか？

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.

LGMDについて世界に何を知ってもらいたいですか？:

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.

もし明日、あなたのLGMDが「治る」としたら、まず何をしたいですか？:

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.