04/25/2015

ИМЯ:  Audrey

ВОЗРАСТ: 42 Yrs. Old

СТРАНА: Соединенные Штаты

LGMD Подтип: LGMD2i

В КАКОМ ВОЗРАСТЕ ВАМ ПОСТАВИЛИ ДИАГНОЗ:
I was diagnosed with LGMD when I was 37. I had never heard of it before my diagnosis.

КАКИЕ У ВАС БЫЛИ ПЕРВЫЕ СИМПТОМЫ:

I noticed in my twenties I began having trouble climbing stairs, raising from the floor, and lifting my legs. Unfortunately, I didn’t know how abnormally weak I was becoming. I thought I was just out of shape or uncoordinated. When I needed physical therapy for shoulder pain, the PT sent me back to my doctor because she recognized something was seriously wrong.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

My older sister also has LGMD2i, but her progression is slower.

ЧТО, ПО ВАШЕМУ МНЕНИЮ, ЯВЛЯЕТСЯ НАИБОЛЬШЕЙ ТРУДНОСТЬЮ В ЖИЗНИ С LGMD:

My greatest challenge has been to accept help without feeling like a burden on others. I’m still able to walk, but I need a lot of help from my family with everyday life. I am so fortunate to have such a great family support system. Sometimes I can’t believe how lucky I am!

КАКОЕ ВАШЕ САМОЕ БОЛЬШОЕ ДОСТИЖЕНИЕ:

I’ve spent the last 23 years being a mother to my 3 daughters. Motherhood is certainly my greatest accomplishment.

КАК БОЛЕЗНЬ ЛГМ ПОВЛИЯЛА НА ТО, ЧТО ВЫ СТАЛИ ТЕМ ЧЕЛОВЕКОМ, КОТОРЫМ ЯВЛЯЕТЕСЬ СЕГОДНЯ:

LGMD has allowed me to simply accept what life offers. When faced with this diagnosis and an uncertain future, I’ve found out I’m still okay… I can do this, and I’m going to be okay!

ЧТО ВЫ ХОТИТЕ, ЧТОБЫ МИР УЗНАЛ О ЛГМД:

I think it would be great to put LGMD on more people’s radar. Most doctors I’ve seen haven’t heard of it.

ЕСЛИ БЫ ЗАВТРА МОЖНО БЫЛО БЫ "ВЫЛЕЧИТЬ" ВАШ ЛГМД, ЧТО БЫ ВЫ СДЕЛАЛИ В ПЕРВУЮ ОЧЕРЕДЬ:

If I were cured tomorrow, I’d run. I’d run as far as I could, then I would climb the stairs. I’d help every person who dropped something pick it up. I would plant and tend a beautiful garden. I would never take these legs for granted!