Yekaterinburg boy lives with rare skin disease ichthyosis

Little Miron from Yekaterinburg lives with a rare genetic disease — ichthyosis. Due to this illness, the boy«s skin constantly peels and flakes, resembling fish scales.

His mother, Ulyana Evgrafova, tries to alleviate the child«s condition. She bathes her son five to six times a day and regularly applies special creams to his skin. These procedures require significant financial costs — at least 30,000 rubles (about $300 at current rates) each month.

Miron has to adhere to strict limitations. He cannot wear clothing made of synthetic fabrics, nor can he go out in extreme heat or frost to avoid skin chapping and overheating.

Ulyana runs a blog on social media where she talks about ichthyosis. She explains to subscribers that this disease is not contagious and urges people not to fear those with such a diagnosis. Despite this, others often look at the boy with apprehension or ask tactless questions.

‘When we go to kindergarten, to school, how will this be perceived?’ Ulyana worried. ‘You encounter the stares of others, with questions: what«s wrong with the child, did you burn him? I»ll have to explain it to parents anyway, so I started a blog: the more people know, the better it will be for such children in society.’

Ichthyosis is an orphan genetic disease that manifests in impaired skin keratinization. It is not fatal but can have varying degrees of severity. With moderate and severe forms, patients are assigned disability.

Miron has been diagnosed with lamellar ichthyosis. This form of the disease is extremely rare — approximately one in 300,000 people. An effective medicine or «magic shot» that can cure ichthyosis does not exist today.