11/06/2015

이름:  Siri  AGE:  28 yrs. old

국가:  Norway

LGMD 하위 유형: LGMD2A / Calpainopathy

 

몇 살에 진단받으셨나요?:

I was diagnosed when I was 26 yrs. old.

첫 증상은 무엇이었나요?:

I started experience unexplained fatigue at age 16. When I was 19, I noticed that I had trouble putting my

right arm over my head. In my early 20’s my heel cords started to bug me, being super tight. A few years

later I started struggling with stairs and low seats and I could no longer run or jump.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

No, I am the only family member with LGMD2A.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The everyday tasks people take for granted makes me really frustrated some days. Like getting out of a

chair, turning in bed or tying my shoes – all these little things make me tired and I don’t like wasting

energy on it. But the real struggle is all the extra work it is to have a disability. People don’t see all the

hours I spend doing paperwork getting the things I need and figuring out my rights, physiotherapy, doctor appointments and so on, or all the time I “waste” resting because I have overdone it one day. It is also a challenge to be dependent on other people.

가장 큰 성과는 무엇인가요?:

I completed 6 years in university and got my degree as a teacher. I have also visited many different

countries and hiked in various mountains despite my struggles.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

It has taught me not to take anything for granted. It has made me more humble and thankful for all the little things in life. It has taught me to slow down and be more patient and to dare ask for help with small tasks.  And to enjoy every day! It has also made me be more creative, because I have to find new ways to do things. And I have made SO many new friends! I love that.

LGMD에 대해 전 세계에 알리고 싶은 내용:

That it actually exists is a good start! And that it affects people in different ways, but to most of us it is

super frustrating/depressing to lose abilities over time. We are always dealing with this, since it is a

progressive disease. It’s an ongoing grief. And that it affects our loved ones too. Be kind, always.

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

I would RUN! And jump all over the place. And I would dance all night long! And I would help my friends move or something, haha 😉

 

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