09/08/2015

 

名称:    Shelley    AGE:  50

国名:    Canada

LGMDサブタイプ:    LGMD2A / Calpainopathy

何歳で診断を受けたか:

私は11歳で診断された。

最初の症状は？:

My first symptoms included walking on my tippy toes and difficulty climbing stairs.

ご家族にLGMDの方はいらっしゃいますか？

Yes, all of my siblings are affected.  My sister Michele and brother John both have LGMD2A.

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？:

One of the greatest challenges in my twenties was being physically weaker and unable to have children, childbirth and carrying the child.

It has also been challenging to find meaningful employment despite having a university and college degree.  Employers and employees refusing to understand the needs of having a disability has also been a challenge.

あなたの最大の功績は何ですか？:

One of my greatest accomplishments has been writing my memoir about living with LGMD and helping others overcome their diversities.  Graduating from the university was also an accomplishment.

LGMDは今のあなたにどのような影響を与えていますか？

I don’t take the things that I can do for granted.  I use my disability to educate others through my memoir and inspirational speaking.

LGMDについて世界に知ってもらいたいことは？:

LGMD robs individuals of the strength in their voluntary muscles but does not affect their intellect.   Having a physical disability can be very frustrating, however being judged by others because of a disability can be far worse.

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？:

I would put on a pair of figure skates and skate for hours.  When I was diagnosed 39 years ago, I had my heel cord tendons elongated (due to the development of contractures) and could no longer skate.  It broke my heart!

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