“Isolation and Desperation: The Tale of Ramesh’s Transformation”

Ramesh, afflicted by a rare skin disorder for the past 11 years, has transformed into what seems like a statue, rendering him unable to walk or speak. The appearance of scabs caused other children to fear him, leading to isolation and a lack of friendships. Faced with desperation as a cure remained elusive, Ramesh’s parents could only witness their son’s gradual transformation into what appeared to be a stone-like state.

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The onset of Ramesh’s skin issues occurred when he was a mere 15 days old, with his skin gradually thickening and hardening, ultimately taking on a black hue. Seeking medical assistance in the remote area of Baglung, Nepal proved futile, as doctors were unable to provide treatment, causing Ramesh’s condition to worsen and inflicting pain.

By the age of 5, Ramesh lost the ability to walk and articulate his pain clearly, relying solely on signaling hunger or the need for the toilet. Regrettably, this limited form of communication led to his social ostracization, with other children turning away in fear.

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Ramesh’s inability to attend school since the age of 6 was attributed to his worsening condition, eventually diagnosed as Ichthyosis, a rare disease. However, the family’s modest income prevented them from affording treatment at private hospitals.

Fortuitously, Ramesh received unexpected assistance from British singer Joss Stone, and a video highlighting his struggles garnered support from Nepali singer Sanjay Shrestha. A charity concert organized by Sanjay in Kathmandu raised funds to aid in Ramesh’s treatment, providing a much-needed blessing for his parents.

Currently undergoing treatment at Kathmandu Medical College, doctors aim to enhance Ramesh’s quality of life. However, the extensive damage to his skin has made the process painful, necessitating the removal of skin patches.

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Dr. Sabina Bhattarai, an assistant professor of dermatology, explained the challenges faced by patients like Ramesh, with dry, thick, and scaly skin causing significant discomfort. Despite the late admission to the hospital, efforts are underway to help Ramesh stand through physical therapy.

While Ramesh’s narrative unfolds, there are unfortunate lives in India, such as Saubra, born in 2000, grappling with pustular psoriasis. Living with constant discomfort and a stench from pus stains, Saubra’s condition has not improved despite seeking treatment and depleting the family’s resources. Daily life involves the painful peeling of layers of skin, causing immense suffering.

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