04/03/2015

ИМЯ:  Lacey    ВОЗРАСТ: 42

СТРАНА: United States

LGMD Подтип: LGMD2i

 

В КАКОМ ВОЗРАСТЕ ВАМ ПОСТАВИЛИ ДИАГНОЗ:

I was diagnosed with Muscular Dystrophy at 16 and LGMD2i at 34. Both diagnosis’ came over the phone. In hindsight, I wish the doctors would have told me in person, I had so many questions and was scared.

КАКИЕ У ВАС БЫЛИ ПЕРВЫЕ СИМПТОМЫ:

The first symptoms I noticed were painful leg cramps when running and not being able to keep up with the other kids. I was told I was lazy and to try harder in PE and in softball. I remember thinking, “I am trying as hard as I can, how do I make myself go faster like the other kids?”

ЕСТЬ ЛИ У ВАС ДРУГИЕ ЧЛЕНЫ СЕМЬИ, СТРАДАЮЩИЕ LGMD:

No, I don’t have any other family members with LGMD.

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

The constant changes and trying to find ways to adapt to my new normal.

КАКОЕ ВАШЕ САМОЕ БОЛЬШОЕ ДОСТИЖЕНИЕ:

My greatest accomplishment is living each day as it comes with compassion and courage, being a wife to my supportive husband, and a mom to our loving girls.

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

LGMD has forced me to slow down, to become present and aware. I am a stronger, more empathetic person because of this disease. I have learned to cry and laugh at the same time.

ЧТО ВЫ ХОТИТЕ, ЧТОБЫ МИР УЗНАЛ О ЛГМД:

I would want the world to have more awareness of LGMD, especially doctors. I know for many of us, the road to getting a diagnosis is a long one and it doesn’t have to be. Some LGMD’s have cardiac and pulmonary issues and I think it’s essential to have knowledgeable doctors monitoring and providing support.

ЕСЛИ БЫ ЗАВТРА МОЖНО БЫЛО БЫ "ВЫЛЕЧИТЬ" ВАШ ЛГМД, ЧТО БЫ ВЫ СДЕЛАЛИ В ПЕРВУЮ ОЧЕРЕДЬ:  The first thing I would want to do, is run-I wish I could remember what it feels like.  Sometimes when I’m driving in my scooter, I close my eyes and pretend I’m running-it gets a bit dangerous 🙂