"Butterfly Children": Towards a Pain-Free Life

May 15, 2026

Currently, 126 patients with epidermolysis bullosa are registered with medical professionals in Kazakhstan, 92 of whom are children.

Epidermolysis bullosa is an orphan, rare genetic disorder in which even minor injuries—friction, pressure, eating hard foods, or even spontaneous impact—lead to the formation of painful blisters on the skin and mucous membranes. The skin becomes extremely fragile, like butterfly wings, and any contact can cause wounds that take a long time to heal and often lead to infections and severe complications. This is why children with this diagnosis are called "butterfly children."

- Epidermolysis bullosa remains a complex disease, but modern medicine can improve patients' quality of life. Specialized ointments and innovative dressings play a significant role, as conventional dressings can further injure the skin. "Patients are provided with essential ointments and modern atraumatic dressings funded by local budgets," notes R.T. Kuanyshbekova, Director of the Kazakh Scientific Center for Dermatology and Infectious Diseases (KSCDID).

The use of innovative care products helps reduce pain, lower the risk of infection, and facilitate daily skin care.

KSCDID specialists regularly consult with patients with epidermolysis bullosa, including through telemedicine for residents of the regions. This format helps families quickly receive recommendations from specialized specialists.

KSCDID plans to soon open a department for the treatment of genodermatoses—a group of hereditary diseases characterized by pathological changes in the skin, hair, nails, and mucous membranes. The department will include special rooms for the treatment and rehabilitation of children. This will improve the quality of medical care for young patients.

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