INDIVIDUAL WITH LGMD: Sabesan

İsim: Sabesan
Age: 24
Ülke: India
LGMD Alt Tip: LGMD 2B / LGMD R2 dysferlin-related
Kaç yaşında teşhis konuldu?
I was diagnosed at the age of 18.
En büyük başarınız nedir?
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.
İlk belirtileriniz neydi?
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.
LGMD bugün olduğunuz kişi olmanızda sizi nasıl etkiledi?
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.
LGMD hastası olan başka aile üyeleriniz var mı?
I have one elder sister. She is normal. No one in my family members have LGMD.
Dünyanın LGMD hakkında ne bilmesini istersiniz?
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.
LGMD ile yaşamanın en büyük zorluklarının neler olduğunu düşünüyorsunuz?
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.
LGMD hastalığınız yarın "tedavi edilebilseydi", yapmak isteyeceğiniz ilk şey ne olurdu?
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.






