04/08/2016 – LGMD “Spotlight Interview”

NAME:  Mary   Alter: 46

LAND: Vereinigte Staaten

LGMD Unter-Typ: LGMD2A / Kalpainopathie

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

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

Was waren Ihre ersten Symptome?:

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.

Haben Sie andere Familienmitglieder, die LGMD haben?

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

Was sind für Sie die größten Herausforderungen im Leben mit 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.

Was ist Ihre größte Errungenschaft?:

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.

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

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.

Was möchten Sie der Welt über LGMD mitteilen?:

LGMD is a muscle wasting disease.

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

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

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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