12/10/2015

NOM:  Michal   AGE: 35 yrs. old

PAYS: Poland

LGMD Sous-type: Unknown

 

À quel âge avez-vous été diagnostiqué ?:

I was diagnosed when I was 25 years old.

Quels ont été vos premiers symptômes ?:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

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

NO , I’m the only person in my family who has this disease.

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le LGMD ?: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

Quelle est votre plus grande réussite ?:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

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

I have become more insensitive to pain and I’m not fearful of any challenges

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

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

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

I think if I were cure tomorrow, I would run and do everything I never could do!

 

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.