INDIVIDUAL WITH LGMD: Sabesan

名称: Sabesan
Age: 24
国家: India
LGMD 子类型: LGMD 2B / LGMD R2 dysferlin-related
您是在几岁时被诊断出来的?
I was diagnosed at the age of 18.
您最大的成就是什么?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.
您最初的症状是什么?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.
LGMD 是如何影响您成为今天的自己的?
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.
您有其他家庭成员患有 LGMD 吗?
I have one elder sister. She is normal. No one in my family members have LGMD.
您希望世界了解 LGMD 的哪些方面?
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.
您认为 LGMD 患者生活中最大的挑战是什么?
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.
如果明天就能 "治愈 "您的 LGMD,您首先想做的是什么?
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.






