NAME: Tamara               AGE: 41
COUNTRY: United States
LGMD SUB-TYPE:  LGMD 2B/R2 Dysferlin-related

AT WHAT AGE WERE YOU DIAGNOSED?

I was diagnosed at the age of 27 years old.

WHAT WERE YOUR FIRST SYMPTOMS?

I noticed that I was having trouble going up stairs and getting on my tip toes.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD?

My younger brother was diagnosed after me based off of my diagnosis.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD?

The progression can be challenging. Right, now is the pain from pressure from being in a wheelchair and or in the bed.

WHAT IS YOUR GREATEST ACCOMPLISHMENT?

Finding God in the midst of my circumstances and turning my situation into a chance to advocate, becoming Ms. Wheelchair Kansas, and then becoming Ms. Wheelchair America is on the list as well but 2nd to God is my family.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY?

LGMD had been a driving force to becoming a better advocate and to being a more empathetic person.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD?

LGMD isn’t a death sentence. That there is life to live even with the diagnosis.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO?

I would just go on a walk with my dog.