INDIVIDUAL WITH LGMD: Sabesan

Imię i nazwisko: Sabesan
Wiek: 24
Kraj: India
Podtyp LGMD: LGMD 2B / LGMD R2 dysferlin-related
W jakim wieku zostałeś zdiagnozowany?
I was diagnosed at the age of 18.
Jakie jest twoje największe osiągnięcie?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.
Jakie były pierwsze objawy?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.
Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj?
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.
Czy masz innych członków rodziny cierpiących na LGMD?
I have one elder sister. She is normal. No one in my family members have LGMD.
Co chciałbyś, aby świat dowiedział się o 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.
Co uważasz za największe wyzwanie w życiu z 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.
Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?
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.






