INDIVIDUAL WITH LGMD: Sabesan

Nom : Sabesan
L'âge : 24
Pays : India
LGMD Sous-type : LGMD 2B / LGMD R2 dysferlin-related
A quel âge avez-vous été diagnostiqué ?
I was diagnosed at the age of 18.
Quelle est votre plus grande réussite ?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.
Quels ont été vos premiers symptômes ?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.
Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?
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.
Avez-vous d'autres membres de votre famille qui sont atteints de LGMD ?
I have one elder sister. She is normal. No one in my family members have LGMD.
Que voulez-vous que le monde sache sur le 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.
Quels sont, selon vous, les plus grands défis à relever pour vivre avec le 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.
Si votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?
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.






