News from MDS Support Community in Croatia
by Dražen Vincek
Croatia marked MDS World Awareness Day
Croatia celebrated MDS World Awareness Day on the 25th of October. The event organised by HULL (The Croatian Leukemia and Lymphoma Society) started at 15:00 hours at the Croatian Journalist Association Club in Zagreb, where experts from all fields explained to the public the main facts about the disease, and informed them about treatments and diagnostics.
HULL branch office in Varaždin also marked MDS Awareness Day through gathering on Franciscan Square 4 from 10:00 to 12:00 in the morning where people could get information about MDS and other hematologic diseases at the MDS info point.
Myelodysplastic syndrome is a disease that can develop into acute myelogenous leukemia (AML). It mostly occurs in older people, though, as can be heard on World Awareness Day, this boundary is already moving towards younger age. The causes of the disease remain largely unknown, but exposure to certain substances such as benzene or as a result of treatment with cytostatic drugs in some patients is mentioned as potential risks.
Some patients have high risk and their myelodysplastic syndrome can quickly develop into AML. Before it develops there are at least four, five types of MDS predecessors. The age limit for mutations in the blood is getting lower. Hematologists in Western Europe and the United States now have a special interest in seeing any changes in the individual’s blood sequence – explained Dr. Med. Inga Mandac Rogulj of the Hematology Institute KB Merkur describing MDS as a disease with lots of faces that can at any time begin to lose control.
Dr. Gordana Kaić, MD from the Institute for Cytology and Cytogenetics of KB Mercury while Dr. med talked about the importance and procedure of cytological diagnosis gathered. Darko Krnić from the Croatian Agency for Medicinal Products and Medical Products (HALMED) explained the procedure for approving a drug and stressed the importance of reporting side effects.
How does it feel to be an MDS patient in Croatia?
Prof. Ana Mrčić, a famous Croatian athlete who was received a bone marrow transplantation a year and four months ago, shared with us how to live with MDS. After transplantation Prof. Mrcic experienced the most common complication of transplanted people treated for this syndrome; GVHD, Graft Versus Host Disease, which she described as a disease passed to the recipient by the donor. GVHD happens when particular types of white blood cell (T cells) in the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft) see your body cells (the host) as foreign and attack them.
„I had a bone marrow transplant. I received the stem cells from a sister who I am yet to meet. She gave me her cells. I had acute and chronic GVHD, and, as an athlete, I found it very difficult to cope with muscular atrophy“ said prof. Mrcic in his open and personal presentation of her experience with MDS treatment and GVHD – the most common cause of transplanted deaths.