Share Your MDS Story

I was diagnosed with myelodysplastic syndrome in 2010. I had peripheral blood cytopenias (pancytopenia). The first few years I felt good in spite of the fact that I had obvious health problems: bruises, fatigue, weakness, dizziness, bleeding from the gums and nose. Four years after diagnosis I became blood transfusion dependent. Almost seven years after diagnosis I had allogeneic transplantation from unrelated donor. I spent 33 days in the hospital sterile unit. The ninth day after transplantation, my new bone marrow started to work. Shortly after transplantation I had acute graft-versus-host disease (GvHD) and eleven months after transplantation I started to feel symptoms of chronic GvHD of my eyes, skin, joints, tendons and vaginal. In this moment, eight years after transplantation, I still have most of these symptoms, but they are much milder now.

I am living with chronic GVHD, but I feel healthy and I am very active. All the time of my illness before transplantation I was training athletics and competing in European and World championships for master athletes, with bruises, fatigue, weakness, bleeding from the gums and nose. I was the European and World Master Champion in triple jump outdoors (Izmir, 2014 and Perth, 2016) in cathegory Women 45-50 years. Croatian Masters Association declared me the best master athlete in Croatia two times: in 2013 and 2016.

Almost all the time in a hospital steril unit I was also active, exercising and walking 2 km a day in my hospital room. I wrote a hospital diary: “Vacation in a spaceship”, thinking I can help others with my experience.

Four months after transplantation, despite complications and health problems, I started to train again. In the meantime, due to necrosis caused by the therapies, I had an artificial hip implanted. Sometimes it is not easy to train, but I didn't give up. Sport helps me. I am still jumping, but also runing, swiming and climbing mountains. I climbed the highest mountain peak in Africa – Uhuru Peak, Kilimanjaro, 5895 m.

Last year I participated in the European Transplant Sports Championships in Lisbon and I got gold medal in high jump and silver medal in long jump. This year I participated in the World Transplant Games in Dresden, returning home with three medals (athletics and swimming), becoming the World Champion among transplanted women in the high jump.

Last ten years I have been sharing my experience with other patients. I think we can help each other. I also think that doctors and patients can learn a lot from each other.

I have already organized two campaigns of registering potential donors of stem cells in Croatian registry. I am an active member of both Croatian Leukemia and Lymphoma society and a Croatian Sports Recreation Transplant Association. As a psychologist and a stem cells recipient, I am happy to help others, volunteering to provide psychological help to people in need. At the same time, I am grateful to blood and stem cell donors for giving me and other patients the gift of life.