07/29/2015:

NOM: Patricia  AGE:  26 yrs old

PAYS: États-Unis

LGMD Sous-type: LGMD2A / Calpaïnopathie

 

À QUEL ÂGE AVEZ-VOUS ÉTÉ DIAGNOSTIQUÉ ?:

I was diagnosed with MD when I was 12 years old.

QUELS ONT ÉTÉ LES PREMIERS SYMPTÔMES ?:

First symptoms were toe walking, arms not going straight, limping gait, and not gaining weight.

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD :

No one in my family has Muscular Dystrophy or LGMD.

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le LGMD ?:

The greatest challenge is not being able to do certain things such as Walking, Running, Getting out of bed on my own, Bathing on my own, Cooking dinner, Playing with my nephew on the floor. Everything I do is a challenge.

QUELLE EST VOTRE PLUS GRANDE RÉALISATION ?:

Greatest accomplishment would be getting married to a wonderful man and hopefully soon starting a family, also when I got my power chair and was able to cook dinner for the first time in 2 years, and being able to go outside with my husband.

COMMENT LA LGMD VOUS A-T-ELLE INFLUENCÉ POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS ÊTES AUJOURD'HUI :

It has made me realize that even though I am limited on things I can do, with the right tools I can still do some of those things just in a different way.

QUE VOULEZ-VOUS QUE LE MONDE SACHE SUR LA LGMD ?:

Educate yourself on LGMD and some of the struggles people go through. Don’t judge someone on how they look. Every form of MD has a different look but that doesn’t make the person. their personality makes the person. If you see someone struggling whether in a wheelchair or walking offer to help, I know for me when someone asks if they can help me I am very grateful for it.

SI VOTRE LGMD POUVAIT ÊTRE "GUÉRIE" DEMAIN, QUELLE SERAIT LA PREMIÈRE CHOSE QUE VOUS SOUHAITERIEZ FAIRE ?:

I would run as fast as I can down the road and around the block, I would jump up and down and maybe even do flips. I dream of the day I can do this.