15 may – international day of patients with mucopolysaccharidosis – a severe genetic disease associated with congenital metabolic disorders.

That is why, on may 17 at the children’s hospital OKHMATDYT Kyiv city gathered children who suffer from this extremely rare disease. Gathered in order to remind both society and the government about themselves and their problems by running into the sky purple balls.

In Ukraine patients with mucopolysaccharidosis a little more than 60 people and all need lifelong medical treatment, assistance and support for doctors of different specialties and companies. That is why the flashmob was preceded by a lecture for parents, where specialists give advice on treatment and care of such patients, and answered all questions parents questions. The question about initiation of the creation of the treatment Protocol of children with the fourth type of the disease, and what to do parents of children with the third type of treatment for which, to date, does not exist. Also, experts have explained the situation with clinical trials and difficulties, which obstruct the creation of drugs for the treatment of mucopolysaccharidosis.

Parents had the opportunity to ask questions to experts in many fields, but especially popular was the information provided by the children’s orthopedist, as all children diagnosed with mucopolysaccharidosis faced with orthopedic problems and only early diagnosis and prompt initiation of therapeutic measures able to stop the degenerative processes.

Such meetings are very important for patients with rare diseases. This possibility of communication, both parents and children and the exchange of useful information, so necessary with the diagnosis of mucopolysaccharidosis.

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