04/03/2015

姓名:  Lacey    年龄: 42

国家: United States

LGMD 子类型: LGMD2i

 

您在几岁时确诊:

I was diagnosed with Muscular Dystrophy at 16 and LGMD2i at 34. Both diagnosis’ came over the phone. In hindsight, I wish the doctors would have told me in person, I had so many questions and was scared.

您最初的症状是什么？:

The first symptoms I noticed were painful leg cramps when running and not being able to keep up with the other kids. I was told I was lazy and to try harder in PE and in softball. I remember thinking, “I am trying as hard as I can, how do I make myself go faster like the other kids?”

您是否有其他家庭成员患有 LGMD:

No, I don’t have any other family members with LGMD.

您认为患有 LGMD 的最大挑战是什么？:

The constant changes and trying to find ways to adapt to my new normal.

您最大的成就是什么:

My greatest accomplishment is living each day as it comes with compassion and courage, being a wife to my supportive husband, and a mom to our loving girls.

lgmd 是如何影响你成为今天的自己的？:

LGMD has forced me to slow down, to become present and aware. I am a stronger, more empathetic person because of this disease. I have learned to cry and laugh at the same time.

您希望世界了解 LGMD 的哪些方面？:

I would want the world to have more awareness of LGMD, especially doctors. I know for many of us, the road to getting a diagnosis is a long one and it doesn’t have to be. Some LGMD’s have cardiac and pulmonary issues and I think it’s essential to have knowledgeable doctors monitoring and providing support.

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？:  The first thing I would want to do, is run-I wish I could remember what it feels like.  Sometimes when I’m driving in my scooter, I close my eyes and pretend I’m running-it gets a bit dangerous 🙂