07/29/2015:

NOMBRE: Patricia  EDAD:  26 yrs old

PAÍS: Estados Unidos

Subtipo LGMD: LGMD2A / Calpainopatía

 

A QUÉ EDAD LE DIAGNOSTICARON:

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

¿CUÁLES FUERON SUS PRIMEROS SÍNTOMAS?:

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

¿TIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?

No one in my family has Muscular Dystrophy or LGMD.

¿Cuáles crees que son los mayores retos de vivir con 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.

¿CUÁL ES SU MAYOR LOGRO?:

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.

¿CÓMO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?

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.

¿QUÉ QUIERE QUE EL MUNDO SEPA SOBRE LA DGML?:

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 MAÑANA SE PUDIERA "CURAR" SU DGML, ¿QUÉ SERÍA LO PRIMERO QUE DESEARÍA HACER?:

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.