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New educational portal for Wilson's disease patients and their relatives launches

MedExpress Team

Medexpress

Published March 31, 2023 09:03

New educational portal for Wilson's disease patients and their relatives launches - Header image
Fot. Getty Images/iStockphoto
While the very name "rare diseases" may suggest that they are unique health problems and affecting only a small fraction of the population, statistics leave no illusions - despite their being titled "rare" - the total number of sufferers is huge. Rare diseases affect millions, and by the fact that each disease has its own peculiarities, it is often difficult to get to the source of health problems. Both treatment and diagnosis are complex and complicated, as sometimes the disease affects only a dozen, a few dozen or a few hundred people nationwide. One such disease is Wilson's disease. With a view of these patients, a new educational portal zyciezchorobawilsona.pl has just been created.

Wilson's disease is a rare genetic disorder that leads to the accumulation of excess copper in the body, particularly in the liver and brain. If the disease is not diagnosed early and treated appropriately, the accumulation of copper can cause severe organ damage and result in severe disability and even death.

Treatment of the disease involves taking preparations that reduce the absorption of copper from the gastrointestinal tract with zinc salts, or removing excess copper from the body via d-penicillamine or trientine. In Poland, treatment with d-penicillamine and trientine is reimbursed, with the latter available under a drug program aimed at patients with Wilson's disease. The drug program can be provided by institutions with gastroenterology, hepatology and neurology profiles. The selection of the appropriate therapy is carried out under the supervision of a physician and is related primarily to the type and severity of the disease's symptoms, as well as to observed side effects.

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