04/08/2016 – LGMD “Spotlight Interview”

NOME:  Mary   Idade: 46

PAÍS: Estados Unidos

LGMD Sub-tipo: LGMD2A / Calpainopathy

 

Com que idade foi diagnosticado:

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

Quais foram os seus primeiros sintomas:

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.

Tem outros familiares que sofrem de LGMD:

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

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

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.

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

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.

O que quer que o mundo saiba sobre a LGMD:

LGMD is a muscle wasting disease.

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

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

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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