02/12/2014:

姓名: Lydia

年龄: 45

国家:美国

LGMD 子型号: LGMD2B / Miyoshi

你是几岁被诊断出来的？ 41

你最初的症状是什么？
My first symptoms included: knees popping out of place, leg, foot, chest, neck, and arm pain, falling, lethargy, strange duck-waddle gait.

您是否有其他家庭成员患有肺结核？
没有

您认为患有 LGMD 的最大挑战是什么？
The progressive nature of the condition is frightening. The lethargy LGMD causes is debilitating as well. In addition to the condition, I find the lack of accessibility and social attitudes toward disabled people as very limiting.

你最大的成就是什么？
This is a hard one. Managing to work, care for small children and a mother with dementia and my elderly father (along with the assistance of my siblings), and earning a Bachelor’s of Social Work. Looking back, I am amazed that I was able to do it all.

lgmd 是如何影响你成为今天的自己的？
It has increased my empathy toward others and has been the impetus for my development of a disability consciousness.

您想让世界了解 LGMD 的哪些方面？
Firstly, that they know about it at all. Even most medical professionals are unaware of this condition.

Secondly, it is progressive and debilitating.

Thirdly, I feel fairly safe in saying that most of us who have it would prefer otherwise, which is why research and public awareness are so vital.

Fourthly, and this is an example, recently in one of our online groups, people with my condition were discussing the five things that they would like to do if cured. Things such as holding their children and giving loved-ones hugs. This is the pernicious reality of LGMD.

如果明天就能 "治愈 "你的老年痴呆症，你首先想做的是什么？
I would love to be able to go on a hike in a wooded area with my family.