07/22/2015:

İSİM: Leanne YAŞ: 50 yrs. old
ÜLKE: Australia
LGMD Alt Tipi: LGMD2A / Calpainopathy

KAÇ YAŞINDA TEŞHIS KONULDU?:
I was diagnosed at the age of 42 yrs. old through a muscle biopsy.

İLK BELIRTILERINIZ NEYDI?:
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.

LGMD HASTASI OLAN BAŞKA AİLE ÜYELERİNİZ VAR MI?:
Hayır, LGMD teşhisi konulan tek aile üyesi benim.

LGMD İLE YAŞARKEN KARŞILAŞTIĞINIZ EN BÜYÜK ZORLUKLARIN NELER OLDUĞUNU DÜŞÜNÜYORSUNUZ?:
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

EN BÜYÜK BAŞARINIZ NEDIR:
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 .

LGMD BUGÜN OLDUĞUNUZ KİŞİYE DÖNÜŞMENİZDE SİZİ NASIL ETKİLEDİ?:
I am definitely more empathetic and in less of a hurry (hahaha) and more accepting that life is not always a “bed of roses”

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ:
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.

LGMD HASTALIĞINIZ YARIN "TEDAVİ" EDİLEBİLECEK OLSA, YAPMAK İSTEYECEĞİNİZ İLK ŞEY NE OLURDU:
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!!