02/18/2015:

NAME: Suzanne

AGE: 45

COUNTRY: England

LGMD Sub-Type: LGMD2B – Miyoshi Variant

你是几岁被诊断出来的？
I was correctly diagnosed at around 29 yrs. old.

你最初的症状是什么？
I couldn’t stand on tip-toes.

您有其他家庭成员患有 LGMD 吗？

您认为患有 LGMD 的最大挑战是什么？
The greatest challenge is finding the energy to do everything I want to do. I find that something like even getting out of a chair is such hard work.

你最大的成就是什么？
My greatest accomplishment is getting married and having two wonderful children. I have also learned to sail a boat with Sailability and have been ice skating in my wheelchair!

lgmd 是如何影响你成为今天的自己的？
It has helped me to realize what is really important in life such as family and friends and appreciate what I have as there are always people worse off than you.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD: There are currently no treatments or cure for LGMD 2B Miyoshi. The Jain Foundation is currently helping with clinical studies and research to find out more about the disease and try to find treatments or a cure!

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 give my kids a “proper full-on” hug, run down the road and take dance lessons.