04/08/2016 – LGMD “Spotlight Interview”

NOM:  Mary   L'âge: 46

PAYS: États-Unis

LGMD Sous-type: LGMD2A / Calpaïnopathie

 

À quel âge avez-vous été diagnostiqué ?:

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

Quels ont été vos premiers symptômes ?:

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.

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

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

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

Quelle est votre plus grande réussite ?:

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.

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

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.

Que voulez-vous que le monde sache sur le LGMD ?:

LGMD is a muscle wasting disease.

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

Si votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?:

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!

 

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