Misha Reiman, an 18-year-old with a severe form of epidermolysis bullosa (EB), recently underwent a complex surgery to correct a debilitating foot deformity, offering him a renewed chance at independent mobility. The surgery, performed at the Clinic of High Medical Technologies in St. Petersburg, represents a significant step in Misha’s ongoing battle against the rare genetic disease.

EB, often referred to as “Butterfly Children” disease, causes the skin to be extremely fragile, leading to constant wounds, pain, and scarring. Misha’s specific condition, a severe dystrophic form of EB, affects not only his skin but also the mucous membranes lining his internal organs.

Due to the condition Misha developed a contracture of the ankle joint. His leg began to deform, making it impossible for him to stand on it normally. As a result, his foot froze in an unnatural position, forcing him to walk on his toes, which led to spinal curvature.

The decision to proceed with surgery was made after careful consideration by a team of doctors, including Elena Belonogova, a pediatrician, pediatric neurologist, and expert at the “Butterfly Children” Foundation. The risks associated with operating on a patient with EB, such as purulent complications and infections, required months of preparation to stabilize Misha’s condition.

The surgery itself, performed by Viktor Vilensky, a leading Russian traumatologist, orthopedic surgeon, and his colleagues Olga Fomylina and Maxim Baushev, involved correcting the foot deformity using the Ilizarov method. While the procedure is considered minimally invasive, the constant risk of infection due to Misha’s fragile skin made it particularly challenging. Misha is only the second patient in Russia with a severe form of EB to undergo such an operation.

Following the surgery, Misha is currently using a wheelchair and undergoing rehabilitation. Doctors are optimistic that he will eventually be able to walk on his own with the aid of an individual orthosis. His mother expressed hope for a full-fledged rehabilitation in the autumn, marking a new stage and motivation for Misha.

Despite the challenges, Misha remains determined to regain his mobility. Supported by his mother, the medical team, and the “Butterfly Children” Foundation, he is focused on his recovery and future possibilities. The foundation provides comprehensive support to over 2,500 patients with genetic dermatoses in Russia and the CIS countries.