LGMD "スポットライト・インタビュー"

名称:  Karen  年齢: 54 Yrs. old

国名:アメリカ

LGMDサブタイプ:  LGMD 2I

 

何歳で診断されましたか？

私は33歳で診断された。

最初の症状は何でしたか？

My first symptom was an overall weakness compared to other kids in gym class in grade school.  High School gym class was even worse.  I experienced tight hamstring and calf muscles.  My calves were large. Next was the noticeable change in my gait.

LGMDを患っている家族が他にいますか？

いいえ、LGMDと診断された家族は私だけです。

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

The greatest challenges of living with LGMD are completing daily personal and household tasks, managing activity and rest, being prepared to access public spaces, and planning for future needs.

あなたの最大の功績は何ですか？:

With the love and support of my family and friends, I embrace and experience life in spite of ever changing limitations and obstacles.  That is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are TODAY?

Living with LGMD has formed me into an accepting, determined, resourceful, humble, and grateful person. I learned to accept my diagnosis and realize that, as it progresses, it provides me with the opportunity to grow as a person.

LGMDについて世界に知ってもらいたいことは？?

LGMD is a progressive disease.  It affects every thought that goes into every motion of every day.  Continued research and development for a cure, treatment, and assistive devices are essential.

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？:

If I was cured tomorrow, I would Rollerblade!

 

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