How a boy with ichthyosis lives in Yekaterinburg

Yekaterinburg resident Ulyana Evgrafova runs a special blog. Her son has a rare genetic disease — ichthyosis. Miron«s skin peels off every day like fish scales, which is why such children are called »fish kids.«

To alleviate her son«s condition, his mother bathes him five to six times a day and applies special creams. This costs a significant amount of money — at least 30,000 rubles (about $300 at current rates) per month.

The child cannot wear synthetic clothing or go out in extreme heat or cold to prevent his skin from chapping and himself from overheating.

In her blog, Ulyana explains what ichthyosis is and tells followers that they need not fear people with this condition. Some look at the boy with disdain, but there«s actually nothing to fear: the disease is not contagious, and Miron is no different from other children except for his unique skin.

«When we go to kindergarten, to school, how will it be perceived?» Ulyana worried. «You encounter stares from 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.»

We published the full story of Ulyana and Miron in a separate article. And above — a video about how the toddler and his mother cope with daily challenges and the stares of others.

Ichthyosis is a rare (orphan) genetic skin disease. It is characterized by a disorder of skin keratinization, which manifests as the formation of scales resembling fish scales. The disease can be congenital or develop over a lifetime. It is not fatal.

There are many types of ichthyosis, and it is also divided by severity. In moderate and severe forms, children are given disability status. Miron has lamellar ichthyosis, which occurs in 1 in 300,000 people.

There is no medication or magic injection for ichthyosis, unlike some other genetic diseases, such as SMA.

We also told the story of a Ural boy with a «crystal» skeleton. Due to a rare disease, the boy«s bones break like twigs.