Residents of the Kirov region complained to the Popular Front that children with Shereshevsky-Turner syndrome were not given drugs that could save them from disability until they received disability status. About this “Parliamentary newspaper” reported In the press service of a public institution.
This syndrome is typical only for women, so the growth of girls from an early age practically stops. They can be saved with therapy that replaces hormones that the body does not produce. Regular use of drugs can help a child grow by 10 cm per year, but the annual cost of treatment is about 264 thousand rubles. The representative of the Popular Front, Yulia Zimova, said that girls without disabilities are not given free medicine.
“Doctors can prescribe the hormone, but not everyone can buy it. Moreover, in order to get free medicine, the disease has to progress so much that the person becomes crippled. It is clear that a change in legislation is needed. The main thing is that parents do not get into situations where they do not know whether they can pay for the growth of their child, ”said Zimova.
Specialist of the Popular Front, chief immunologist of the Moscow region, Andrey Prodeus, suggested adding Shereshevsky-Turner syndrome to the list of crippling diseases, which would allow parents to receive the necessary drugs for free.
“There is already practice in the regions to create competence centers for orphan diseases responsible for the referral of such children. This is suitable for both parents and professionals. It is important that such centers emerge in every region.”
Surgeons of the regional clinical hospital before rescued Newborn with severe esophageal pathology. Diagnosed with tracheoesophageal fistula, this pathology is congenital and extremely rare.