INDIVIDUAL WITH LGMD: Sabesan

名前 Sabesan

Age: 24

India

LGMD サブタイプ LGMD 2B / LGMD R2 dysferlin-related

何歳で診断されましたか?
I was diagnosed at the age of 18.

最大の功績は何ですか?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.

最初の症状はどのようなものでしたか?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.

LGMDは今のあなたにどのような影響を与えていますか?
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.

LGMDを患っている家族が他にいますか?
I have one elder sister. She is normal. No one in my family members have LGMD.

LGMDについて世界に知ってもらいたいことは?
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.

LGMDと共に生きていく上で、最も困難だと感じることは何ですか?
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.

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか?
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.