09/17/2015

NAME:  Gitika & Gopika   AGE:   38 yrs old

COUNTRY:  India

LGMD Sub-Type (if known):  LGMD2B

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

We were diagnosed at the age of 21 yrs.

Was waren Ihre ersten Symptome?:

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

Haben Sie andere Familienmitglieder, die LGMD haben?

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

Was sind für Sie die größten Herausforderungen im Leben mit 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.

Was ist Ihre größte Errungenschaft?:

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.

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

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.

Was möchten Sie der Welt über LGMD mitteilen?:

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.

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

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.

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