INDIVIDUAL WITH LGMD: Rebecca

04/30/2016  LGMD "Spotlight Interview" (en anglais)

 

NOM:  Rebecca    AGE: 29 ansLGMD2A - Becc

PAYS:  Australia

LGMD Sous-type:   LGMD2A / Calpainopathy

 

À quel âge avez-vous été diagnostiqué ?:

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

Quels ont été vos premiers symptômes ?:

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

Avez-vous d'autres membres de votre famille atteints de LGMD ?

I am the only one out of 4.

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le 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.

Quelle est votre plus grande réussite ?:

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.

Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?

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

Que voulez-vous que le monde sache sur le 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 votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?:

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.

Pour lire d'autres "LGMD Spotlight Interviews" ou pour vous porter volontaire en vue d'une prochaine interview, veuillez consulter notre site web à l'adresse suivante :  https://www.lgmd-info.org/spotlight-interviews