您是在几岁时被诊断出来的？
9

您最大的成就是什么？
My greatest accomplishment is continuing to live an active and meaningful life despite LGMD. I’m building strong relationships, adapting to challenges, and maintaining my sense of purpose and humor through it all.

您最初的症状是什么？
My body was always hurting

LGMD 是如何影响您成为今天的自己的？
LGMD has made me more patient, resilient, and appreciative of the small victories in life. It’s taught me to problem solve daily, advocate for myself, and value the people who truly show up and support me.

您有其他家庭成员患有 LGMD 吗？
没有

您希望世界了解 LGMD 的哪些方面？
I want the world to understand that LGMD is often invisible at first, but it deeply impacts strength, mobility, and energy. People with LGMD are still capable, driven, and full of life. They just navigate the world differently and deserve accessibility, respect, and understanding.

您认为 LGMD 患者生活中最大的挑战是什么？
The greatest challenges are the gradual loss of strength and independence, and adapting to changes in mobility over time. Everyday tasks that used to be simple now require planning, support, or adaptive equipment. There’s also the emotional side of learning to adjust while still trying to live fully and not let the condition define everything.

如果明天就能 "治愈 "您的 LGMD，您首先想做的是什么？
I would want to experience freedom of movement again. Walk, travel more easily, and do everyday things without needing to think about limitations or fatigue. I would pick my son up and carry him. Be a “normal” dad.