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.