이름:         Lena              나이:  44

국가: 미국

LGMD 하위 유형:  Limb-Girdle Muscular Dystrophy type 2J/R10 Titan-related

몇 살에 진단받으셨나요??

I was diagnosed at age 42.

첫 증상은 어떤 것이었나요?

As a preschool teacher, I noticed that it was becoming very difficult to get up from the floor. Then I started falling and losing my balance.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

My sister and I both have been diagnosed with LGMD subtype 2J, we also think that our father and all our uncles could have had it. (They are all deceased and were never diagnosed.)

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요??

Not being able to do all the physical activities that I want to do. The uncertainty of the future and if my children will develop LGMD as well. Another challenge I deal with is coping emotionally with the gradual weakening of my legs and limbs.

가장 큰 성과는 무엇인가요?

I am proud of being a mother and a wife. I am also proud of being active in a community social group, participating with “Rock The Vote”, and learning how to use social media to meet people all over the world.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

I am more of an advocate for my health. I am more empowered to ask questions and take actions that help me and others that maybe otherwise would be ignored or overlooked.

LGMD에 대해 전 세계에 알리고 싶은 내용?

You can still love, laugh, and live a meaningful life with LGMD. The physical limitations of our bodies do not stop us from continuing to learn and experience the world.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want do?

If I could be cured tomorrow, I would drive to the beach and wiggle my toes in the ocean!!!