LGMD "Entrevista en primer plano"

Nombre:    Adriana    Edad:  48 years old

País:   Argentina

Subtipo LGMD: LGMD2B

 

WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age 20.

WUÁLES FUERON SUS PRIMEROS SÍNTOMAS:

My first symptoms included: difficulty climbing stairs, tiredness, and some falls.

¿TIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?  

Yes, my brother also has LGMD.

W¿CUÁLES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LGMD?:

In the beginning the greatest challenge was the process of accepting the disease. Given that I am a very independent person with a very active life, today my biggest challenge is making my desires compatible with what is possible, and finding strategies that permit me to reach my goals, understand my limits, and find solutions.

WUÁL ES SU MAYOR LOGRO:

Being able to overcome the obstacles I was facing, being a mother, being surrounded by my loved ones, and working every day at something I like.  Working in an NGO for neuromuscular diseases, ADM Argentina, of which I was its president in 2011 and 2016.

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

I had to redefine my projections for my future and in what fields I wanted to work, that was a big challenge. But it was possible, I was able to grow as a person, to live my daily life with more interest, to value what life has offered me, and to try to help other who are going through similar situations.

W¿QUÉ QUIERE QUE EL MUNDO SEPA SOBRE LA PMDL?:

I would like the whole world to know about the existence of LGMD, its possible treatments, above all fight for early detection to improve our quality of life.  Support diagnosis and research.

ISI MAÑANA PUDIERA "CURARSE" DE SU DGML, ¿QUÉ SERÍA LO PRIMERO QUE DESEARÍA HACER?:

I would go skating again.

 

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