Nomesh ’s Leg Ulcer Journey
My name Nomesh Kumar, I’m a 35-year-old Sickle Cell warrior from Chhattisgarh State of India. I was diagnosed with sickle cell disease at the age of seven. Growing up with sickle cell wasn’t easy especially coming from a small village where access to the nearest hospital was 30 Km away from my village. Whenever I had a sickle cell crisis my family would get scared seeing in pain. Every time I was admitted and needed blood my mother would donate her blood to save my life. Unfortunately, my mother passed away when I was 10 years old and I was left in the care of my father and big brother until my dad remarried. Due to my new mother not understanding sickle cell, I and my brother had to move out of home and lived by ourselves. This wasn’t easy and we dropped off out school to find work.
Living with sickle cell is always a struggle I have been through a lot, and I have suffered many complications, first an infection in my liver and leg ulcer which I have been suffering from for over 15 years now. Having the leg ulcer is very painful and hard. My leg ulcer developed as a small scratch which gradually formed into a very big open wound. After months of hospital visits, treatments, and home remedies my leg ulcer had still not yet healed, so the doctors advised that I do skin graft, a type of surgery that involves skin transplant.
The skin graft helped for a while but unfortunately, the leg ulcer returned and slowly it became an open would once again due to doing a lot of walking and standing at work. The pain was unbearable due to it being infected. Once again, I had to do skin graft which continued from the period of 2015 to 2018. During this period the leg ulcer wound would heal and dry up with the help of dressing the wounds at home and using ointments but still appeared and became an open wound once again.
Currently I have been on Crizanlizumab injections for a few months now and I have noticed tremendous improvement with my leg ulcer as it is almost completely healed. My wound is dry, I do not use any dressing and I do not experience any kind of pain from it. Having leg ulcer has made it difficult to find work but even with my struggles I continue to help others through many Sickles Cell Organization here in India and across the world. I’m grateful to have been included in the Amplify Sickle Cell Voices created by Ms Agnes Nsofwa from Australia. I want to thank her for providing us with different networks from around the world.