Novosibirsk Schoolgirl Thrives Despite Rare Ichthyosis Condition
Alice«s skin is very dry and requires constant care.
12-year-old Alice Toporishcheva from Novosibirsk was born with a rare genetic skin condition — ichthyosis. She spends about two hours a day on mandatory care procedures. The disease does not prevent her from studying in a regular school, taking dance classes, drawing, and dreaming of a career as a veterinarian. NGS spoke with her mother about how the family lives with this diagnosis.
A Rare Diagnosis That Can«t Be Seen on Ultrasound
Ichthyosis is a genetic disease that disrupts the process of skin exfoliation and hydration. Standard ultrasounds and screenings do not detect this disease, so the diagnosis came as a complete surprise. The baby was born in a dense, shiny membrane resembling cellophane. Doctors call this a «collodion baby.»
The newborn was placed in an incubator with high humidity, and the head of the resuscitation department at the maternity hospital began teaching the parents how to care for the special skin. After nine days, the family was discharged home with the words: «You«re ready. You»ll manage.»
A Normal Life with Minor Adjustments
The first months were a trial for the entire family. Care procedures took up almost all the time.
«We acted like robots: applying ointments, bathing, treating. It was life in a haze,» Anna recalls.
Her mother had to leave her career at a bank, but the family rallied. Even Alice«s five-year-old brother helped take care of his sister.
Alice«s entire family together.
Now Alice is 12 years old, and she manages the daily procedures herself. Every morning starts with a shower and applying special products all over her body — this takes about an hour. In the evening, the ritual is repeated.
But this doesn«t stop the girl from living an active life: studying at a regular Novosibirsk school, attending art school, going to a dance studio, and performing at concerts. Alice also runs a blog where she talks about her life and dreams of becoming a veterinarian or a groomer.
«There are moments when she says: «When will they invent a pill for this?»» Anna admits. «But it«s just emotions. She knows it»s her peculiarity, and even experiments with makeup — she loves highlighter.»
How to Answer Questions and Make Friends
At school, Alice had conflicts with classmates, but the family learned to resolve them. After talking with the mother of one of the boys, the situation was resolved — moreover, the offender became a friend and even helped carry a heavy folder with drawings.
To questions from strangers, the girl responds simply: «No, I wasn»t burned, I just have dry skin.«
«We explained to her that people ask not out of malice, but out of ignorance,» the mother says. «And she learned to take it calmly.»
From Shock to Acceptance
Anna honestly talks about her experiences: «At first you think: this isn«t happening to me, it will end soon. Then anger — why me? Then acceptance. Our life split into before and after.»
Now the family lives a full life, albeit with peculiarities. Alice has many friends, plans for the future, and creative hobbies.
Anna says the challenges only brought their family closer.
«My husband and I always told her that she«s a beauty and an incredible girl,» Anna says. «Ichthyosis is simply her peculiarity, which doesn»t prevent her from being a kind and good person.»
Alice is not the only child with ichthyosis in Novosibirsk — Yaroslav Mityakin also learned to live with peculiarities and not be ashamed of the scales on his skin.
