09/08/2015

 

이름:    Shelley    AGE:  50

국가:    Canada

LGMD 하위 유형:    LGMD2A / Calpainopathy

몇 살에 진단받으셨나요?:

저는 11살에 진단을 받았습니다.

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

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

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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.

LGMD에 대해 전 세계에 알리고 싶은 내용:

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.

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

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!

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 신청하려면 다음 웹사이트를 방문하세요: https://www.lgmd-info.org/spotlight-interviews