LGMD "スポットライト・インタビュー"  

名称: Becky   年齢:  35 yrs. old

国 アメリカ

LGMDサブタイプ: LGMD2B

 

何歳で診断されましたか？

I was diagnosed in 2009 at the age of 27.

最初の症状は何でしたか？

My first symptoms were difficulty walking up steps, getting up from the ground or getting up from a seat/toilet.

ご家族にLGMDの方がいらっしゃいますか？

No other family members have 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 biggest challenge for me is the mental part of understanding my limitations. Knowing that my life is not the way I had ever imagined it would be. Knowing the things my husband and I had to change in order to cope and deal with this continuously progressing disease.

あなたの最大の功績は何ですか？

I think my greatest accomplishment after being diagnosed with this disease is my marriage. We got married 2 months before I started having all of the tests to determine what was wrong. In sickness and in health came a lot sooner than we could have ever imagined, but we are stronger today because of it.

LGMDは今のあなたにどのような影響を与えていますか？

This disease is life-changing. Despite how dependent I am on my family and friends I am still fairly independent. I drive with hand controls, I am resourceful in the ways that I find to keep doing things for myself, and in a way, even though my muscles are weaker, I am stronger. This didn’t happen all at once. It took time to realize that I am a strong person even though my muscles are weak.

LGMDについて世間に何を知ってもらいたいですか？

I want the world to know and understand that this disease is so challenging. Sometimes my brain doesn’t remember that I can’t do something and I will just start to do it only to realize I can’t. I want them to know that from the moment someone with LGMD wakes up they have to immediately think about how they are going to tackle the day. The world should know that this disease, while somewhat invisible, is real and is extremely difficult to deal with. That just because someone is out and about with this disease does not mean that they are OK or cured. We still have to live our lives, even if behind our smile we are exhausted or hurting. The world should also know that THERE WILL BE A CURE. There are so many people working on this and the strides made in just the few short years I’ve been diagnosed have been huge.

もし明日、あなたのラグム病が「治る」としたら、まず何をしたいですか？

This list is LONG….but first I would run. My legs haven’t moved that way in such a long time.

 

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