07/29/2015:

姓名: Patricia  年龄:  26 yrs old

国家:美国

LGMD 子类型: LGMD2A / Calpainopathy

 

您在几岁时确诊:

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

您最初的症状是什么？:

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

您是否有其他家庭成员患有肺结核？

No one in my family has Muscular Dystrophy or LGMD.

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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.

您最大的成就是什么:

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 是如何影响你成为今天的自己的？

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.

您希望世界了解 LGMD 的哪些方面？:

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.

如果明天就能 "治愈 "你的老年痴呆症，你最想做的第一件事是什么？:

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.