02/18/2015:

NAME: Suzanne

AGE: 45

COUNTRY: England

LGMD Sub-Type: LGMD2B – Miyoshi Variant

何歳で診断されましたか？
I was correctly diagnosed at around 29 yrs. old.

最初の症状は何でしたか？
I couldn’t stand on tip-toes.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No

LGMDと共に生きる上で、最も困難だと感じることは何ですか？
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.

あなたの最大の功績は何ですか？
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は今のあなたにどのような影響を与えていますか？
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!

もし明日、あなたのラグム病が「治る」としたら、まず何をしたいですか？
I would give my kids a “proper full-on” hug, run down the road and take dance lessons.