INDIVIDUAL WITH LGMD: Sabesan

Имя: Sabesan

Age: 24

Страна: India

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

В каком возрасте вам поставили диагноз?
I was diagnosed at the age of 18.

Какое ваше самое большое достижение?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.

Каковы были ваши первые симптомы?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня?
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.

Есть ли у вас другие члены семьи, страдающие LGMD?
I have one elder sister. She is normal. No one in my family members have LGMD.

Что вы хотите, чтобы мир узнал о 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.

Что, по вашему мнению, представляет наибольшую сложность в жизни с 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.

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь?
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.