04/08/2016 – LGMD “Spotlight Interview”

NOME:  Mary   Età: 46

PAESE: Stati Uniti

Sottotipo LGMD: LGMD2A / Calpainopathy

 

A che età è stata fatta la diagnosi:

I was diagnosed with LGMD when I was 25 years old.

Quali sono stati i primi sintomi:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

Avete altri familiari affetti da LGMD:

No, I am the only family member to ever be diagnosed with LGMD.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?:

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

Qual è il suo più grande risultato:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

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

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

Cosa volete che il mondo sappia della LGMD?:

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

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

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

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