03/31/2015

Name:  Eva    Age: 33 Yrs. Old

Country:  Kenya

LGMD Sub-Type :  Unknown

몇 살에 진단을 받으셨나요? 

I was diagnosed at the age of 14.

첫 증상은 무엇이었나요?:

I had difficulty running fast and raising my hand up with ease. I was never able also to bend and sweep the floor properly when it came to doing house chores.

다른 가족 중에 LGMD를 가지고 있는 사람이 있나요?:

No. I am the only one with muscular dystrophy in our family.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하십니까?:

My muscles are getting weaker by the day and that means my level of dependency is also increasing. It’s hard for me to keep a personal caregiver because most of them do not have the heart, they start complaining just weeks after being employed. I am grateful for the support I get from my husband and relatives who show up to keep my house clean and assist in any way possible.

가장 큰 성과는 무엇인가요?:

Getting married and starting a family with my husband,  Creating awareness about Muscular Dystrophy in Kenya. Many people are now aware of the condition and are glad to have started because I have met more people in the country with the same condition through Muscular Dystrophy Awareness of Kenya and hoping still to do more.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

Because of  LGMD I think I have to plan my days in advance, I cannot just wake up in the morning and say, today am going out simply because transport has to be arranged, I must have an escort e.t.c. I am also very optimistic of the future and my life is influenced much with my Christian beliefs.

세상이 LGMD에 대해 알았으면 하는 것은 무엇인가요?

A diagnosis of LGMD  is not a death sentence, you can live your life to the fullest doing what you can at the time. LGMD weakens your muscles but it shouldn’t weaken your spirit. People living with LGMD can work and employers should not shy away from employing us. With the research work going on, plus the trials a cure for muscular dystrophy is in the horizon, I hope it gets here sooner.  

내일 LGMD가 '완치'될 수 있다면 가장 먼저 하고 싶은 일은 무엇일까요?
I would kneel down, raise my hands towards heaven and worship my God.