INDIVIDUAL WITH LGMD: Rebecca

04/30/2016  LGMD "Spotlight Interview"

 

NAME:  Rebecca    AGE: 29 years oldLGMD2A - Becc

LAND:  Australia

LGMD Unter-Typ:   LGMD2A / Calpainopathy

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

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

Was waren Ihre ersten Symptome?:

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

Haben Sie andere Familienmitglieder, die LGMD haben?

I am the only one out of 4.

Was sind für Sie die größten Herausforderungen im Leben mit 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.

Was ist Ihre größte Errungenschaft?:

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.

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?

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

Was möchten Sie der Welt über LGMD mitteilen?:

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.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

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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