04/30/2016  LGMD "スポットライト・インタビュー"

 

名前:  Rebecca    年齢29歳

国名:  Australia

LGMDサブタイプ:   LGMD2A / Calpainopathy

 

何歳で診断を受けたか:

I was diagnosed with LGMD2A when I was 26 years old.

最初の症状は？:

My first symptoms included:  difficult climbing stairs and inclines as well as not being able to rise without using my hands to me up.

ご家族にLGMDの方はいらっしゃいますか？

I am the only one out of 4.

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 for me is battling fatigue.  It can become really hard to find a balance between doing too much and not doing enough.  I have found that I’m adapting to change basically every year.  It is also a challenge to not be so hard on myself when I see others doing activities which I can’t do.  It can be challenging to ask for help when I cannot fulfill a task on my own.  Pain – I can’t remember the last time that I woke up and felt no pain, discomfort and feeling fragile.

あなたの最大の功績は何ですか？:

My daughter is 10 years old and she is my greatest accomplishment.  I might not be good at some things in life but I can honestly say I’m the best Mum!  She is my life.  And, as she is growing up, she is starting to look after me in more ways than one.

LGMDは今のあなたにどのような影響を与えていますか？

I might be becoming physically weaker in my body but I have become stronger mentally.

LGMDについて世界に知ってもらいたいことは？:

That is strips away everything that you know.

I also want them to know about Coalition to Cure Calpain 3 – the organization focused on finding a cure and treatment for LGMD2A.

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 go out with my family with not limits.  I would run around with my daughter and climb 100 stairs.

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