LGMD "スポットライト・インタビュー"

名称:  Kelci   年齢: 23 yrs. old

国名: Australia

LGMDサブタイプ (if known):  LGMD2J – Titinopathy

 

何歳で診断を受けたか:

I was just recently diagnosed at the age of 23.

最初の症状は？:

At first I noticed having to consciously think about stepping up on to pavement or ledges. I then noticed that climbing stairs was getting more difficult as well as walking distances.

ご家族にLGMDの方はいらっしゃいますか？

Yes, one sibling does.

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 challenge about living with LGMD is finding daily activities such as walking distances or climbing stairs difficult, as these were things that I once didn’t think twice about. Another challenge for me is having a rare form of Muscular Dystrophy, as there is hardly any information for me to relate to or predict what may happen.

あなたの最大の功績は何ですか？:

LGMD is still very new to me as I was only diagnosed 3 months ago, I am still trying to adjust and figure out what living with LGMD is going to mean for my future. My biggest accomplishment is just simply learning how to stay positive and incorporate Muscular Dystrophy into my life.

LGMDは今のあなたにどのような影響を与えていますか？

I believe I have learned not to take anything for granted and to appreciate what you have, while you have it. It’s so important to stay positive!

LGMDについて世界に知ってもらいたいことは？:

I think it’s important to realize that we are still the same person we once were. People should also know that not every day is the same for someone with LGMD, some days we will be better than others and what we can do one day we may not be able to do the next.

 

 

LGMDスポットライト・インタビュー」をもっと読みたい方、または今後のインタビューに志願したい方は、ウェブサイトhttps://www.lgmd-info.org/spotlight-interviews。