Christina Raj, found this article in 2018 . She has been in relentless pursuit to track these two Ichthyosis patients with Lamellar ARCI type. She was finally able to get the contact details with the help of SDM Ms Disha Badwani. in JUly 2024.
A disease that made the skin of humans like a snake – (naidunia.com)
Christina contacted the village sarpanch Shabana Saboo , who helped connect with the family . I spoke to Omprakash , he shared his heartbreaking story of being in isolation, paralyzed from in bed, because a quack visited him, gave him some oil and burnt ash to be applied all over the body as if it was the curse of a snake . They applied the ash all over which reacted and eventually the spine and legs became stiff , rendering him paralyzed and at the mercy of his family .
Omprakash’s face is stiff , it looks like his smile has frozen and his facial muscles too are affected . People cannot gauge his emotions and this hurts him more. He goes around the village begging for cooking oil mixed in mug of water and pour over himself to keep his skin moisturized. All villagers call him tirki nickname snake in native dialect.
Christina traveled another 20 kms further to meet 27 yr lady Deri in the nearby village Shapur. She is oldest of 3 children. Her mother passed away. Deri lives with her father and younger sister who is married. Deri, is scared to speak, or interact with people. She said, she doesn’t want to see the look of disgust, when people see her. Her father said, he never saw her smile since child. Omprakash and Deri do not have birth certificates nor Aadhar card. When they go to local hospital for treatment, they are charged 4 times more, to be allowed inside . They say skin disease is contagious. Christina gave them creams and emollients to last for 4 months. CIRM Foundation thanks Savaari travels and driver Jitender Singh .
