04/03/2015

이름:  Lacey    AGE: 42

국가: United States

LGMD 하위 유형: LGMD2i

 

몇 살에 진단을 받았습니까?:

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.

첫 증상은 무엇이었나요?:

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?”

다른 가족 중에 LGMD를 가지고 있는 사람이 있나요?:

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

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하십니까?:

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

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 당신이 되기까지 어떤 영향을 미쳤나요?:

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.

세상이 LGMD에 대해 알았으면 하는 것:

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.

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