A representative of the NGO Mladiinfo Montenegro attended an online conference marking the Day of Rare Diseases, organized on February 26, 2021. HAE Montenegro and NORB Montenegro.
The meeting was opened by Marija Nikolić, President of HAE Montenegro, who told us that as patient associations they make special efforts to support patients themselves and improve their quality of life, as well as building partnerships with the health system of this country.
Dr. Veselinka Mitrović, pediatrician – gastroenterologist, Institute for Children’s Diseases, Clinical Center of Montenegro, told us about spinal muscular atrophy. Mitrovic said that Spinal Muscular Atrophy (SMA) is a rare and progressive muscle atrophy, accompanied by loss of basic life functions such as walking, eating, swallowing and breathing. two years of age.
With Hereditary Angioedema HAE, there are 40 registered patients in Montenegro, out of that number, 25 patients appear due to receiving the drug icatibant, the rest of the patients are registered but do not receive the drug. XY patients are candidates for long-term prophylaxis but cannot receive approval. It is also very important to listen to what patients want, their questions and worries, said Dr. Katarina Mitrović, ENT – allergist.
Dr. Enisa Žarić, hematologist, told us about the problems that doctors face when it comes to rare diseases in hematology. One of the problems is that KCCG is the only place in Montenegro where hematological patients are treated with chemotherapy. Also, as far as radiological diagnosis is concerned, a standard one can be performed, while PET CT is not available in Montenegro.
Hereditary Angioedema from the patient’s perspective, Marija Nikolić told us. “The disease manifests itself in the form of frequent swelling, including internal organs. Swelling is unpredictable and often occurs after some emotional stress, physical trauma, pregnancy or taking certain medications. “Attacks last from three to five days and are extremely painful when they occupy internal organs, they are dramatic attacks, patients lose consciousness, and unfortunately the statistics show that every third patient loses life without adequate therapy,” said Nikolić.
At the end of the online meeting, Natasa Bulatović, NORB of Montenegro, addressed us, telling us that the National Organization for Rare Diseases of Montenegro was founded on May 9, 2015. years. NORB CG is a non – governmental social – humanitarian association, founded as a voluntary association of individuals suffering from rare diseases. Bulatović also told us that they are planning many collaborations in the future to help an individual or a group.