이름: Jasmine

나이: 24 years old

국가: 미국

LGMD 하위 유형: LGMD 2A/R1 calpain 3-related

몇 살에 진단받으셨나요??

I was just recently diagnosed at the age of 24.

첫 증상은 어떤 것이었나요?

Toe walking was my first symptom. I’ve noticed weakness since I was a little girl. I remember in elementary school that when it was my turn to play basketball against the other team it took me forever to get up from the floor to run down to the other side of the court. I was using my hands on my knees to stand up. In middle school, I started avoiding steps because I noticed my legs began to become weaker going up and down stairs. Then all of a sudden, I couldn’t step up a sidewalk/curb. I used to have to pick up my leg with my pants while trying to step up.

LGMD를 앓고 있는 다른 가족이 있나요??

I am the only person in my family diagnosed with LGMD.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요??

The greatest challenges in living with LGMD is keeping my independence as long as I can.

가장 큰 성과는 무엇인가요?

I recently graduated from Georgia Military College with my Associates Degree in Middle Grades Education. I am now a new transfer student at the best “University of Georgia” majoring in Middle Grades Education. The good news is that I’m pursuing a double major program where I will be graduating with my master’s at the same time as my Bachelor’s! I plan on becoming a Mathematics teacher (favorite subject). Eventually I plan on furthering my career goals a bit further depending on the progression of my MD: as a backup or final option, I plan to become an online college professor where I can stay home majority of the time and teach prerequisites in either English or Mathematics.

LGMD가 현재의 자신을 만드는 데 어떤 영향을 미쳤나요??

Having LGMD has made me very humbled and patient in any situation that I face head on. Plus, I’ve actually learned a lot of cool hacks to accommodate myself when I’m home and away from home especially now at this age and as a young woman in college navigating through this world with MD!

LGMD에 대해 전 세계에 알리고 싶은 내용?

I want the world to know that having LGMD is different from most other disabilities. If we fall, we cannot get up from the ground. With that being said, taking our arm to help us up, doesn’t work for most of us. We literally have to be pulled up by our waist to stand us up until we are able to lock our body in position to stand. And when our body has been overworked, it can take a few days for us to recuperate. Some of the simple tasks that able-bodied people complete, we cannot. We also have to think about it before actually doing that specific task. With this disease we tend to have to check out every place before we go to make sure it is accessible and that we have accommodations.

LGMD가 다음과 같은 경우 "내일 "완치"된다면 가장 먼저 하고 싶은 일은 무엇일까요??

I would want to get up from a low chair because that is one of my biggest struggles with LGMD right now.