Tashkent, Uzbekistan (UzDaily.com) -- On 10 October, a long-awaited event was held for the NGO Kapalak Bolalar, their wards and the medical community of Uzbekistan - the opening of the first department for the treatment of gene dermatoses in Central Asia.

The event was attended by representatives of the Ministry of Health of the Republic of Uzbekistan, head of the Russian Foundation for Art, Science and Sport Fatima Mukhomedzhan, head of the Russian Foundation for Children-Butterflies Alyona Kuratova, Trustee of the Russian Foundation for Children-Butterflies, People’s Artist of the Russian Federation Ksenia Rappoport.

Before the construction of a specialized department, such a complex of procedures could only be completed in Moscow or St. Petersburg. In addition, in the new department, patients with BB will undergo operations for which doctors need special training. The Department of Genodermatoses at the RSNPMTSDViK of the Ministry of Health of the Republic of Uzbekistan is intended for the diagnosis and treatment of hereditary skin diseases, in particular, epidermolysis bullosa and ichthyosis.

“Thanks to the accumulated expertise of the fund, we were able to share our extensive practical experience in the treatment of gene dermatoses with foreign colleagues, trained specialists and built the institution’s work from scratch,” said Alena Kuratova, head of the Butterfly Children Foundation.

At the moment, over 300 cases of epidermolysis bullosa have been registered in Uzbekistan. The disease is characterized by the appearance of wounds on the skin, which must be constantly closed with special dressings and protected from repeated damage. People with epidermolysis bullosa are called "butterflies", comparing their sensitive skin to the wing of a butterfly.

The rates of ichthyosis are much higher - more than 1,900 people. The skin of patients with ichthyosis is not able to retain moisture and needs constant care with the help of special products. Due to the external resemblance of the skin to the scales of fish, patients with ichthyosis are called "fish". "Butterflies" need special expensive dressings, which are not even produced in Uzbekistan.

So far, medical advances do not completely cure or prevent the appearance of BB. But doctors have methods at their disposal to make life easier for adults and children with BB. Persons with such a diagnosis need daily skin dressings and, of course, regular examination by doctors, since the disease gives complications to the internal organs. From 6 million to 50 million soums - just such a lot of money, depending on the severity of the disease, is required for a patient with BB every month. In addition to the pain that causes illness not only to the "butterflies" themselves, but also to their loved ones, families are sometimes burdened with an unbearable financial burden.

“We have a lot of plans for secession. We want to give butterfly children a procedure for expanding the esophagus - balloon dilation, as well as to treat and remove teeth under anesthesia. All these understandable operations become very difficult for our wards, because their mucous membrane is special and not every specialist can do it, but only a specially trained one. Thanks to the support of Alisher Usmanov’s charitable foundation "Art, Science and Sport", we do not stop at what has already been achieved and boldly continue to implement socially significant, difficult projects," said Gulnoza Gafurova, executive director of Kapalak bolalar.

According to experts’ forecasts, in the next few years, the number of "butterflies" and "fish" will increase and, of course, such people, it is vital to receive professional medical care. There are no medications for treatment yet, but you can ensure a good quality of life with proper and competent skin care. Until 2020, there was not a single specialized medical institution in Uzbekistan where rare genetic dermatoses would be treated. These patients were consulted at local KVD throughout the country or at home during special patronages. With a severe course of the disease, the wards were sent for treatment and operations abroad.

With the assistance of the Russian Butterfly Children Foundation, our doctors are constantly improving their knowledge: they undergo online training, take part in master classes, undergo various training programs and internships in leading clinics in Europe and Russia specializing in these rare genetic diseases. If our wards need the help of narrow specialists, for example, surgeons, oncologists and dentists, they can get it here, in the department. For this, the NGO cooperates with the leading specialized medical institutions of the country. Their specialists have undergone special training and know how to provide quality assistance to people with such rare diseases. - says the doctor of medical sciences, professor Akram Rakhmatov.

The new department doesn’t look like a hospital at all. Bright colors are pleasing to the eye and are loved by both children and adults. The department is designed for 24 places, when accommodated with an accompanying person. It is equipped with modern procedural equipment - this is a special equipment for hydrotherapy and light therapy procedures. A room for physiotherapy types of procedures and multidisciplinary diagnostics has also been organized.

“The interior of the room has little resemblance to a hospital. Warm yellow shades delight children and adults, a modern spiral staircase connects the first and second floors,” the Foundation notes.

Very soon, the medical institution will open its doors not only for citizens of Uzbekistan. Residents of other Central Asian states will also be able to receive medical assistance.