LGMD "焦点访谈"

名称:  Karen  年龄: 54 Yrs. old

国家:美国

LGMD 子类型:  LGMD 2I

 

您是在几岁时被诊断出来的？

我在 33 岁时被确诊。

您最初的症状是什么？

My first symptom was an overall weakness compared to other kids in gym class in grade school.  High School gym class was even worse.  I experienced tight hamstring and calf muscles.  My calves were large. Next was the noticeable change in my gait.

您有其他家庭成员患有 LGMD 吗？

不，我是唯一被诊断出患有 LGMD 的家庭成员。

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

The greatest challenges of living with LGMD are completing daily personal and household tasks, managing activity and rest, being prepared to access public spaces, and planning for future needs.

您最大的成就是什么？:

With the love and support of my family and friends, I embrace and experience life in spite of ever changing limitations and obstacles.  That is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are TODAY?

Living with LGMD has formed me into an accepting, determined, resourceful, humble, and grateful person. I learned to accept my diagnosis and realize that, as it progresses, it provides me with the opportunity to grow as a person.

您希望世界了解 LGMD 的哪些方面？?

LGMD is a progressive disease.  It affects every thought that goes into every motion of every day.  Continued research and development for a cure, treatment, and assistive devices are essential.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

If I was cured tomorrow, I would Rollerblade!

 

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