LGMD Spotlight interview – 09/02/2016

 

이름:  Melanie  나이:  29 yrs. old

국가:   Germany

LGMD 하위 유형 :  LGMD2i (heterozygous type)

 

몇 살에 진단받으셨나요?:

I was diagnosed at the age of 4 by having a muscle biopsy.

첫 증상은 무엇이었나요?:

I always fell when I tried to run and to take the stairs.  This resulted in many bruises and scars!  In addition, I couldn’t get up from the floor by myself.   These symptoms already showed up around the age of 2.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

아니요, 가족 중 LGMD를 가진 사람은 저뿐입니다.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenge is to make people understand that I’m not too lazy to do everyday tasks but I am too weak to do them on my own.  Another challenge for many of us is accepting a wheelchair as your best friend!

가장 큰 성과는 무엇인가요?:

There are far too many accomplishments!  Living a good life with LGMD is an accomplishment in itself!  On my blog (www.littlemissturtle.com) I write about all of my accomplishments and adventures on wheels.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I grew up with LGMD.  It made me a very strong person.  Dealing with a progressive disease that causes muscle weakness and atrophy while being fully conscious  about it is a demanding challenge  I appreciate every day of my life!   I stopped working recently to have more time to do all the things I love.  LGMD taught me to take things the easy way.  Enjoy more, worry less, stay positive and spend as much time as possible with loved ones.  That’s my way!

LGMD에 대해 전 세계에 알리고 싶은 내용:

LGMD is a rare and tricky disease.  It cannot be compared to any other disease like Multiple Sclerosis (MS), etc.  It is important to fully listen to a person who has LGMD when he or she asks for assistance – to avoid hurting him or her in the process.

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

I would get up from the bed by myself, dress and then go for the walk of my life!  I would walk for as long as my feet would carry me.

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