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07/22/2015:

NAME: Leanne AGE: 50 yrs. oldLGMD2A - Leanne
COUNTRY: Australia
LGMD Sub-Type: LGMD2A / Calpainopathy

AT WHAT AGE WERE YOU DIAGNOSED:
I was diagnosed at the age of 42 yrs. old through a muscle biopsy.

WHAT WERE YOUR FIRST SYMPTOMS:
I was losing weight around hips and glutes. Upon diagnosis other things fell into place i.e. greater difficulty getting up from a squat, not feeling energized after Gym work, and not springing up stairs.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:
No, I am the only family member diagnosed with LGMD.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:
Lack of spontaneity in activities especially solo trips i.e. camera “playtime”, shopping .

Having to start asking for things to be done when I am always more comfortable being the helper/doer

Having to reassess and redefine my goals and hopes for the future to fit in with the limitations that exist now and will continue to do so without clear guidelines as to how and when the LMGD will progress due to it’s inconsistent nature

WHAT IS YOUR GREATEST ACCOMPLISHMENT:
I hope that I am a good, caring person in all my relationships and that I have helped instill in my young adult children good morals and values .

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
I am definitely more empathetic and in less of a hurry (hahaha) and more accepting that life is not always a “bed of roses”

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:
I would like to see it as easily identifiable amongst the public as such conditions as ALS (MND); they’re still fighting for recognition but have an arguably higher profile than MD, Cancer, MS and many others to help people be understanding and educated about the needs required.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
All have equal billing – Go on a big family walk, take my camera to the beach, travel everywhere with no pre-planning, redecorate and garden!!

 

Leanne
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