01/06/2015:

NAME: Martijn    

AGE: 23

국가: 네덜란드

LGMD 하위 유형: LGMD 2A / Calpainopathy

몇 살에 진단을 받으셨나요?  Approximately around my 15th birthday.

첫 증상은 무엇이었나요?
The first symptoms were visible since I was a baby. I used to creep like a crab and I was physically ‘different’ from my peers. I was active in a number of different sports, such as: gymnastics, volleyball, judo and tennis. But my performance was declining due to the on-going progression of muscle weakness in my body.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?   No.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하나요?
The more practical problems are worse to me. For example walking by my own on the street with crooked sidewalk tiles is quite challenging. It requires a lot of attention and I get tired of this. In most cases I decide to use a wheelchair if I have to walk long distances. Also, explaining my muscle disease to strangers is not my favorite hobby. I am a little bit unsure on how much information I should provide. Some of them are asking about the ‘whole process’ and the more personal things. And some others feel frightened to ask me about any details. Talking about my disease is not a problem for me, but determining how much information to share is the challenge.

가장 큰 성과는 무엇인가요?
Do you have a few seconds? One of my greatest accomplishes are skydiving, studying and doing everything that healthy people consider as ‘not possible’ for disabled people. I do like to cross the borders in my live. I am always looking for adventures, like traveling with friends (actually we scheduled a trip to Iceland in February 2015) and so on. Besides that, a personal accomplishment to me is a presentation about my muscle disease and the way I am dealing with the disease to about 500 medical students.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?
LGMD has influenced my life for sure! It has made me more mature in many ways. The way I handle problems and enjoy my life has significantly changed since my diagnosis.

세상이 LGMD에 대해 알았으면 하는 것은 무엇인가요?
People with LGMD or any other muscular disease are not different from healthy people, they just may need a little assistance, at times. Also, do not talk to the person behind the wheelchair, but speak directly to the person in the wheelchair.

내일 LGMD가 '완치'될 수 있다면 가장 먼저 하고 싶은 일은 무엇일까요?
I would want to go Sky Diving solo!