INDIVIDUAL WITH LGMD: Sabesan

Name: Sabesan

Age: 24

Land: India

LGMD Unter-Typ: LGMD 2B / LGMD R2 dysferlin-related

In welchem Alter wurde bei Ihnen die Diagnose gestellt?
I was diagnosed at the age of 18.

Was ist Ihre größte Errungenschaft?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.

Was waren Ihre ersten Symptome?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?
First time that diagnosed with LGMD2B I felt anxiety and depression. I have even cried. My family members there is no peace after that I have got this condition. Starting it gives negative thoughts in my mind butover the years, it becomes positive.

Haben Sie andere Familienmitglieder, die an LGMD leiden?
I have one elder sister. She is normal. No one in my family members have LGMD.

Was möchten Sie der Welt über LGMD mitteilen?
People of world should know about LGMD. Each country,even within states, should do awareness atleast a year. If new product comes to market,they advertise using big personalities. Like that they should promote us about our awareness and condition.

Was sind für Sie die größten Herausforderungen im Leben mit LGMD?
I could not go independently outside of campus/home. I need a support from caretaker to move on for shopping and other places. I could not able to ride bike/car. I could not able to lift weight. I could not participate in functions.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie dann als Erstes tun wollen?
During LGMD suffered period many people helped me. If I was cured tomorrow, I would help them and meet them directly. I will say thank you. Second point ,I will say to my community about this condition.