LGMD "スポットライト・インタビュー"

名称:  Scott  年齢: 48 yrs. old

国名: アメリカ

LGMDサブタイプ:  LGMD 2L – also known as Anoctaminopathy

 

何歳で診断を受けたか:

Although my MD began about 15 years ago, I was finally diagnosed recently with limb-girdle MD Type 2L. Until now, I was only informed by doctors that it was LGMD.

最初の症状は？:

I began having difficulty climbing stairs and running.

ご家族にLGMDの方はいらっしゃいますか？

いいえ

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？:

I have always been an independent person.  Since I am an only child, I always did things on my own. Lately, I have had to rely more and more on family and friends.  Also, it drives me nuts as to how long it takes me to do things now.

あなたの最大の功績は何ですか？:

I am proud to have completed college and earned my degree.

Also, I am happy to have worked 30 years for the same company before having to resign due my struggling with MD.

LGMDは今のあなたにどのような影響を与えていますか？

I am still trying to develop patience. I take pride in accomplishing tasks that once I took for granted.

LGMDについて世界に知ってもらいたいことは？:

Please continue to support local and national MD charities whether it be financially or volunteering time to those in need. It is greatly appreciated.

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？:

Walk unassisted down by the ocean at one of my local beaches.

 

LGMDスポットライト・インタビュー "をもっと読みたい方、またはボランティアでインタビューに参加したい方は、ウェブサイトをご覧ください： https://www.lgmd-info.org/spotlight-interviews