For the first time, butterfly children underwent surgery in Kazakhstan

February 23, 2023

For the first time in Kazakhstan, in Almaty, on February 23, a unique operation was performed to eliminate syndactyly (separation of fused fingers) to two children with a dystrophic form of epidermolysis bullosa.

The operation within the framework of the GOBMP in the University Clinic of the NAO "Kazakh National Medical University named after S.D. Asfendiyarov" was carried out by the domestic surgeon I. K. Kharamov, head of the department of the children's orthopedic center, pediatric orthopedist of the highest category, candidate of medical sciences. The operation was attended by invited specialists from the Clinic of High Medical Technologies named after N. I. Pirogov, St. Petersburg. Their arrival was organized by the charitable foundation "Kobelek Balalar".

Small patients – children 6 and 10 years old, from the villages of the Almaty region, have been sick from birth with epidermolysis bullosa with the development of contracture of the hands (a disease characterized by cicatricial degeneration of the tendon tissue of the palm). The children were observed and treated for a long time at the Kazakh Scientific Center of Dermatology of Infectious Diseases (KNCDIZ). The doctors of the KNCDIZ fully prepared them for the operation.

The uniqueness of this operation lies in the features of the diagnosis of epidermolysis bullosa.  This is a rare genetic disease. It is characterized by the fact that even with minor injuries (from friction, pressure, solid food intake or even spontaneously), bubbles appear on the skin and mucous membranes. No wonder these children are called butterflies. Therefore, it was necessary to use only unique specialized high-tech dressings and special plastic tires. Another uniqueness was the anesthesia, because due to the formation of bubbles in the oral mucosa, they could also occur on the walls of the upper respiratory tract. The operation was carried out professionally, the children feel well. Ahead is a phased rehabilitation.

Today there are more than 100 patients diagnosed with epidermolysis bullosa in the country, of which 12 children have contracture with a dystrophic form. Previously, patients had to travel abroad for surgery. Now there is an opportunity to receive operational assistance in Kazakhstan.

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