LGMD "焦点访谈"

名称:  Kelci   年龄: 23 yrs. old

国家:澳大利亚

LGMD 子类型 (if known):  LGMD2J – Titinopathy

 

您在几岁时被确诊:

I was just recently diagnosed at the age of 23.

您最初的症状是什么？:

At first I noticed having to consciously think about stepping up on to pavement or ledges. I then noticed that climbing stairs was getting more difficult as well as walking distances.

您是否有其他家庭成员患有 LGMD：

Yes, one sibling does.

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

The greatest challenge about living with LGMD is finding daily activities such as walking distances or climbing stairs difficult, as these were things that I once didn’t think twice about. Another challenge for me is having a rare form of Muscular Dystrophy, as there is hardly any information for me to relate to or predict what may happen.

您最大的成就是什么？:

LGMD is still very new to me as I was only diagnosed 3 months ago, I am still trying to adjust and figure out what living with LGMD is going to mean for my future. My biggest accomplishment is just simply learning how to stay positive and incorporate Muscular Dystrophy into my life.

LGMD 是如何影响您成为今天的自己的？

I believe I have learned not to take anything for granted and to appreciate what you have, while you have it. It’s so important to stay positive!

您希望世界了解 LGMD 的哪些方面？:

I think it’s important to realize that we are still the same person we once were. People should also know that not every day is the same for someone with LGMD, some days we will be better than others and what we can do one day we may not be able to do the next.

 

 

如需阅读更多 "LGMD 焦点访谈"，或自愿参加即将举行的访谈，请访问我们的网站： https://www.lgmd-info.org/spotlight-interviews。