07/22/2015:

NAME: Leanne AGE: 50 yrs. old
LAND: Australien
LGMD Unter-Typ: LGMD2A / Calpainopathy

IN WELCHEM ALTER WURDEN SIE DIAGNOSTIZIERT?:
I was diagnosed at the age of 42 yrs. old through a muscle biopsy.

WAS WAREN IHRE ERSTEN SYMPTOME?:
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.

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN:
Nein, ich bin das einzige Familienmitglied, bei dem LGMD diagnostiziert wurde.

WAS SIND FÜR SIE DIE GRÖSSTEN HERAUSFORDERUNGEN IM LEBEN MIT 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

WAS IST IHRE GRÖSSTE ERRUNGENSCHAFT?:
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 .

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND:
I am definitely more empathetic and in less of a hurry (hahaha) and more accepting that life is not always a “bed of roses”

WAS SOLL DIE WELT ÜBER LGMD WISSEN?:
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.

WENN IHRE LGMD MORGEN "GEHEILT" WERDEN KÖNNTE, WAS WÜRDEN SIE ALS ERSTES TUN WOLLEN?:
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!!