04/30/2016  LGMD "Entrevista em destaque"

 

NOME:  Rebecca    IDADE: 29 anos

PAÍS:  Australia

LGMD Sub-tipo:   LGMD2A / Calpainopathy

 

Com que idade foi diagnosticado:

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

Quais foram os seus primeiros sintomas:

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

Tem outros familiares que sofrem de LGMD:

I am the only one out of 4.

Quais são, na sua opinião, os maiores desafios de viver com a 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 é a sua maior realização:

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.

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

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

O que quer que o mundo saiba sobre a 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 a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

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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