04/30/2016  LGMD "Entrevista en primer plano"

 

NOMBRE:  Rebecca    EDAD29 años

PAÍS:  Australia

Subtipo LGMD:   LGMD2A / Calpainopathy

 

¿A qué edad le diagnosticaron:

I was diagnosed with LGMD2A when I was 26 years old.

¿Cuáles fueron sus primeros síntomas?:

My first symptoms included:  difficult climbing stairs and inclines as well as not being able to rise without using my hands to me up.

¿Tiene otros familiares que padezcan LGMD?

I am the only one out of 4.

¿Cuáles crees que son los mayores retos de vivir con LGMD?:

The greatest challenge for me is battling fatigue.  It can become really hard to find a balance between doing too much and not doing enough.  I have found that I’m adapting to change basically every year.  It is also a challenge to not be so hard on myself when I see others doing activities which I can’t do.  It can be challenging to ask for help when I cannot fulfill a task on my own.  Pain – I can’t remember the last time that I woke up and felt no pain, discomfort and feeling fragile.

¿Cuál es su mayor logro?:

My daughter is 10 years old and she is my greatest accomplishment.  I might not be good at some things in life but I can honestly say I’m the best Mum!  She is my life.  And, as she is growing up, she is starting to look after me in more ways than one.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

I might be becoming physically weaker in my body but I have become stronger mentally.

¿Qué quiere que el mundo sepa sobre la LGMD?:

That is strips away everything that you know.

I also want them to know about Coalition to Cure Calpain 3 – the organization focused on finding a cure and treatment for LGMD2A.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

If I was “cured” tomorrow, I would go out with my family with not limits.  I would run around with my daughter and climb 100 stairs.

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