02/18/2015:

NAME: Suzanne

AGE: 45

COUNTRY: England

LGMD Sub-Type: LGMD2B – Miyoshi Variant

몇 살에 진단을 받으셨나요?
I was correctly diagnosed at around 29 yrs. old.

첫 증상은 무엇이었나요?
I couldn’t stand on tip-toes.

LGMD를 앓고 있는 다른 가족 구성원이 있습니까?

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하나요?
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.

가장 큰 성과는 무엇인가요?
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!

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?
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!

내일 LGMD가 '완치'될 수 있다면 가장 먼저 하고 싶은 일은 무엇일까요?
I would give my kids a “proper full-on” hug, run down the road and take dance lessons.