02/18/2015:

NAME: Suzanne

AGE: 45

COUNTRY: England

LGMD Sub-Type: LGMD2B – Miyoshi Variant

W JAKIM WIEKU ZOSTAŁEŚ ZDIAGNOZOWANY?
I was correctly diagnosed at around 29 yrs. old.

JAKIE BYŁY PIERWSZE OBJAWY:
I couldn’t stand on tip-toes.

CZY MA PAN/PANI INNYCH CZŁONKÓW RODZINY, KTÓRZY CHORUJĄ NA LGMD: Nie

CO JEST DLA CIEBIE NAJWIĘKSZYM WYZWANIEM W ŻYCIU Z LGMD?
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.

JAKIE JEST TWOJE NAJWIĘKSZE OSIĄGNIĘCIE?
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!

JAK CHOROBA ALZHEIMERA WPŁYNĘŁA NA TO, ŻE STAŁEŚ SIĘ OSOBĄ, KTÓRĄ JESTEŚ DZISIAJ:
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!

GDYBY JUTRO MOŻNA BYŁO "WYLECZYĆ" CHOROBĘ ALZHEIMERA, CO BYŁOBY PIERWSZĄ RZECZĄ, KTÓRĄ CHCIAŁBYŚ ZROBIĆ:
I would give my kids a “proper full-on” hug, run down the road and take dance lessons.