09/17/2015

NAME:  Gitika & Gopika   AGE:   38 yrs old

COUNTRY:  India

LGMD Sub-Type (if known):  LGMD2B

À quel âge avez-vous été diagnostiqué ?:

We were diagnosed at the age of 21 yrs.

Quels ont été vos premiers symptômes ?:

Our first symptoms included difficulty standing on our toes and needing to hold onto a handrails after ascending 2 floors.

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

We are a set of identical twins suffering from Limb Girdle Muscular Dystrophy.  There is no family history within the past 5 generations.

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le LGMD ?:

Our greatest challenge is to overcome our gears, growing with this progressive disease and remaining positive.  Gitika had to quit he successful career and become a homemaker.  Gopika still continues running her tutorials at and education center.  She use to teach senior classes in a reputed school earlier.

Quelle est votre plus grande réussite ?:

Our greatest accomplishment has been to come to terms with living this disease and working around our daily chores with continued enthusiasm – in spite of several of several let downs.

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

We both have become more tolerant of people and situations, as we have to let go of our inhibitions and ask for support several times.

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

Often, in the absence of any external visual feedback, it becomes difficult for people to comprehend the level of disability (unless using a power wheelchair) with this disease.  We want the world to be equally passionate about LGMD patients and provide some benefits as given to other disease sufferers.

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

Gitika would like to resume her career and go on a beach destination.

Gopika wishes to run on a treadmill and resume exercising at the gym.

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.