07/22/2015:

이름: Leanne AGE: 50 yrs. old
국가: 호주
LGMD 하위 유형: LGMD2A / Calpainopathy

몇 살에 진단을 받았습니까?:
I was diagnosed at the age of 42 yrs. old through a muscle biopsy.

첫 증상은 무엇이었나요?:
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.

다른 가족 중에 LGMD를 가지고 있는 사람이 있나요?:
No, I am the only family member diagnosed with LGMD.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하십니까?:
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

가장 큰 성과는 무엇인가요?:
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 .

LGMD가 지금의 당신이 되기까지 어떤 영향을 미쳤나요?:
I am definitely more empathetic and in less of a hurry (hahaha) and more accepting that life is not always a “bed of roses”

세상이 LGMD에 대해 알았으면 하는 것:
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.

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇입니까?:
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!!