INDIVIDUAL WITH LGMD: Rebecca

04/30/2016  Intervista a riflettori accesi sulla LGMD

 

NOME:  Rebecca    ETÀ: 29 anniLGMD2A - Becc

PAESE:  Australia

Sottotipo LGMD:   LGMD2A / Calpainopathy

 

A che età è stata fatta la diagnosi:

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

Quali sono stati i primi sintomi:

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

Avete altri familiari affetti da LGMD:

I am the only one out of 4.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.

Qual è il suo più grande risultato:

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.

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

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

Cosa volete che il mondo sappia della 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.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

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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