INDIVIDUAL WITH LGMD: Sabesan

الاسم: Sabesan
Age: 24
البلد: India
النوع الفرعي لـ LGMD LGMD 2B / LGMD R2 dysferlin-related
في أي عمر تم تشخيص حالتك الصحية؟
I was diagnosed at the age of 18.
ما هو أعظم إنجاز لك؟
Although I have LGMD, I have completed post graduate in biostatistics. I am working as Biostatistician in central government institute.
ما هي الأعراض الأولى التي ظهرت عليك؟
First symptoms,I have feeled that could not run completely. I feel tired and pain in the thigh muscles.
كيف أثرت فيك LGMD لتصبح الشخص الذي أنت عليه اليوم؟
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.
هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية العضلية؟
I have one elder sister. She is normal. No one in my family members have LGMD.
ما الذي تريدين أن يعرفه العالم عن 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.
ما هي أكبر التحديات التي تواجهينها في التعايش مع داء الليثيونيز الغدد الصماء؟
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.
إذا كان بإمكانك "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد فعله؟
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.






