INDIVIDUAL WITH LGMD: Sabesan

이름: Sabesan

Age: 24

국가: India

LGMD 하위 유형: LGMD 2B / LGMD R2 dysferlin-related

몇 살에 진단을 받았나요?
I was diagnosed at the age of 18.

가장 큰 성과는 무엇인가요?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.

첫 증상은 어떤 것이었나요?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?
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.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?
I have one elder sister. She is normal. No one in my family members have LGMD.

LGMD에 대해 세상에 어떤 점을 알리고 싶으신가요?
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.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇이라고 생각하시나요?
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.

내일 LGMD를 '치료'할 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?
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.