INDIVIDUAL WITH LGMD: Sabesan

Nombre: Sabesan

La edad: 24

País: India

Subtipo LGMD: LGMD 2B / LGMD R2 dysferlin-related

¿A qué edad le diagnosticaron la enfermedad?
I was diagnosed at the age of 18.

¿Cuál es su mayor logro?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.

¿Cuáles fueron sus primeros síntomas?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?
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.

¿Tiene otros familiares con LGMD?
I have one elder sister. She is normal. No one in my family members have LGMD.

¿Qué quiere que el mundo sepa sobre la LGMD?
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.

¿Cuáles cree que son los mayores retos de vivir con 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.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que le gustaría hacer?
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.