LGMD "Entrevista en primer plano"

NAME: Mackenzie   EDAD: 22 yrs. old

País: USA

Subtipo LGMD: Unknown

A QUÉ EDAD LE DIAGNOSTICARON:

I was just diagnosed last year at the age of 21.

CUÁLES FUERON SUS PRIMEROS SÍNTOMAS:

My first symptoms included my feet and legs aching, sliding my feet when walking, fatigue and having a hard time lifting objects that should be easy to lift for a person of my age/height.

¿TIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?

No, I am the only one.

¿CUÁLES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LA VGMD:

The simplest things can make my body ache (cleaning, trying on clothes, shopping, etc). Constant fatigue is always a struggle. I’m learning to prioritize my daily activities and accept that I can’t always do what I want to do.

¿CUÁL ES SU MAYOR LOGRO?:

I am finishing college to be an elementary/special education teacher.

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

My diagnosis has been less than a year ago, but I have noticed that reaching my goals are more important to me. I also got engaged this year, and I am so happy that we were together before the diagnosis and he still asked me to marry him! I still have goals.

¿QUÉ QUIERE QUE EL MUNDO SEPA SOBRE LA DGM?

I want the world to know that we are not lazy. We wish we could be more active. Every day we think about what we want to do but don’t have the energy or pain tolerance to do. I want the world to know that we are people with hopes and dreams, just like them.

SI SU ALGMD PUDIERA "CURARSE" MAÑANA, ¿QUÉ SERÍA LO PRIMERO QUE DESEARÍA HACER?

If LGMD was cured tomorrow, I would want to live without pain and have the energy a 22-year-old should have!

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