04/03/2015

名前:  Lacey    年齢: 42

国名: United States

LGMDサブタイプ: LGMD2i

 

何歳で診断されたか:

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.

最初の症状は？:

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?”

家族にLGMD患者がいますか？:

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

LGMDと共に生きる上で、最も困難だと感じることは何ですか？:

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

あなたの最大の功績は何ですか:

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は現在のあなたにどのような影響を与えていますか？:

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.

LGMDについて世界に何を知ってもらいたいですか？:

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.

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？:  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 🙂