INDIVIDUAL WITH LGMD: Sabesan

Nome: Sabesan
Age: 24
Paese: India
LGMD Sottotipo: LGMD 2B / LGMD R2 dysferlin-related
A che età è stata fatta la diagnosi?
I was diagnosed at the age of 18.
Qual è il suo più grande risultato?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.
Quali sono stati i primi sintomi?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.
In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi?
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.
Ha altri familiari affetti da LGMD?
I have one elder sister. She is normal. No one in my family members have LGMD.
Cosa vuole che il mondo sappia della 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.
Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.
Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?
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.






