04/30/2016  LGMD "스포트라이트 인터뷰"

 

이름:  Rebecca    AGE: 29 years old

국가:  Australia

LGMD 하위 유형:   LGMD2A / Calpainopathy

 

몇 살에 진단받으셨나요?:

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

첫 증상은 무엇이었나요?:

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

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

I am the only one out of 4.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

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.

가장 큰 성과는 무엇인가요?:

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.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

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

LGMD에 대해 전 세계에 알리고 싶은 내용:

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.

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

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.

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