Lviv children’s medical center started treating children with SMA

Treatment of spinal muscular atrophy (SMA) has begun in the Lviv Western Ukrainian Specialized Children's Medical Center

This was announced on the Facebook page of the Western Ukrainian Specialized Children's Medical Center.

As noted, three patients have already received the first doses of Spinraza.

"Until recently, drugs for this disease were unavailable for patients in Ukraine, so they were forced to go abroad.

Currently, in our Center, patients will receive the necessary treatment and rehabilitation according to world standards. We closely cooperate with the Ministry of Health and expect the state purchase of medicines for all patients, regardless of age and condition," said Marta Sheremet, a doctor at WUSCMC.

The hospital said the first dose was given to 8-year-old Anastasia from the Rivne region, and now the girl is feeling well. Nastya and her parents believe that medication will help them stop the disease and live a full life.

According to the doctors, the first dose was also received by two teenagers from the Lviv region – 15-year-old Anya and 13-year-old Marta, who were undergoing permanent rehabilitation at the medical center.

Anya's mother, Tatiana, said they found out about the diagnosis when her daughter turned one year old. The disease gradually progressed, and after six years, the girl stopped walking.

But despite her illness, Anya attends school and has many friends. The girl is engaged in vocals and dreams that the started treatment will stop the disease and help her achieve her dream of becoming a singer.

Another patient – Marta – was diagnosed at the age of 3. A year ago, the girl stopped walking due to an illness. But she believes that starting therapy will be the beginning of a new life for her and her parents.

The hospital says that before the introduction of the expensive injection, the three girls were prepared for several days; they received infusion therapy and passed all the necessary examinations.

The drug "Spinraza" is injected into the spinal canal under general anesthesia. After the manipulation, the patient should lie on their back for at least 8 hours for an even distribution of the medication. And for at least a day – under the close supervision of doctors.

The manipulation itself, as doctors note, requires careful preparation and skill because children with SMA have scoliosis, which causes complications. Therefore, to start the treatment of spinal muscular atrophy, the doctors of the Center underwent a long training and internship abroad.

According to Marta Sheremet, 26 children from the Lviv region, aged 2 to 18, need treatment for SMA.

Reference

SMA, or spinal muscular atrophy, is a disease that is the most common genetic cause of death among children.

In patients with SMA, the motor neurons of the spinal cord gradually die, which leads to the death of neuronal connections with muscles and muscle atrophy.

This is a gradual but irreversible process, which means losing the ability to move, and, eventually, breathe. Treatment is extremely difficult, expensive, and involves lifelong rehabilitation.

Unlike the drug "Zolgensma," which is used once for children under 2 years of age, "Spinraza" must be taken for life – the first four cumulative doses with an interval of 14 days, then – maintenance injections every four months.

We will remind you that in July, our hospitals received drugs for treating SMA for the first time. Then 150 doses arrived in Ukraine and were distributed to 13 hospitals.