Matej Kuhar: “If I didn’t have haemophilia, I would probably be actively involved in playing basketball.”

The story of Matej Kuhar, born in 1983 in Slovenj Gradec/Slovenia/Europe, tells of his life with B type haemophilia. The B type haemophilia means a person lacks coagulation factor IX and is rarer than for instance A type haemophilia (deficiency of blood-clotting factor VIII). According to recently collected data, there are 197 people with type A and only 24 people with type B haemophilia in Slovenia; these data were recently presented in a blog (slovenian language) titled “How many of us are there in Slovenia?”

Matej now lives in Ložnica at Velenje. This is a small village in the local community of Šentilj at Velenje, with around 190 inhabitants. He was diagnosed with haemophilia at birth. It is interesting that none of his known ancestors had the disease. At Matej’s home they led a normal village lifestyle, his parents were employed and he also has a seven years younger sister, who luckily isn’t a carrier of haemophilia. This is what he shared with us:

I had received a great deal of care, for which I am of course immensely grateful to my relatives. I have naturally encountered bruises as a young child. When problems presented, I visited the General Hospital Celje, where I received the appropriate treatment. I also encountered trouble with venous access or, to put it in more common terms, my bad veins, as we usually say. Despite this, the nurses were very patient and would always make sure I received the required factor.

I attended pre-school twice, so I started school a year later than my peers. In the primary school period, I began to experience problems with my elbow and hip. I had to finish two of my primary school years in a hospital school programme at the Paediatric Clinic in Ljubljana, on account of being hospitalised for such a long period of time. But throughout the eight years of primary school I received tremendous help from my school friends and teachers. We always managed to come to a favourable agreement and whenever I was in need of help, they came to my aid.

After successfully finishing primary school, I had to decide, what to do next, where to go. I was well aware that no “physical professions” were appropriate for my condition, so I started to think about economics, tourism, high school ... I also had a wish to continue my schooling outside of Velenje. After attending informative days, I decided on trade secondary school that was later renamed to business-commercial school in Celje. The main reasons were a favourable presentation of the school and its vicinity to the hospital. I was given a “patient” status at school, so my oral tests were somewhat adapted to my needs in certain subjects, as I had numerous problems with my joints in this period. I had great classmates and teachers at this school, as well. Whenever a nosebleed would occur, they would always come to my aid immediately, with ice, providing escort etc.

Upon finishing the high school programme (3+2), I attended the College of professional studies for the profession of a sales specialist, and upon receiving my diploma in 2006, I attended the Faculty of Commercial and Business Sciences in Celje, where I graduated in 2009. Then, I had to face new challenges in seeking employment ... As I had no success at job interviews, I registered at the public employment service. Occasionally I did public work and on-the-job training. I was employed in 2012 as a receptionist at the Paka Hotel in Velenje. I mainly work nights. I have to admit I like this work, because it evolves contact with people, with our guests, and there is also a lot of administrative work included. Of course, at the very beginning there was some fear present of being alone at work at night, but then we saw this was no problem at all.

Of course, I should mention I have great colleagues and superiors, who let me use days off when I need them, mainly on account of examinations, various haemophilia training courses, and if any health problems occur.

As for life in general, I have to say that I have never felt that I was deprived of anything. My parents and other relatives provide me with full support in everything. Of course I don’t push myself to do things I wouldn’t be able to do. Therefore, my family does not expect me to do heavy physical work. But I do easier work around the house and most of the household chores.

However, I probably would not be able to do all this, if I didn’t receive the blood-clotting factors. Up to 2006, I was receiving the factor in hospitals in Celje and Ljubljana, after that I was advised to decide on self-therapy at home. I had a trial period and found it to be a great solution. Until 2018, I was receiving Octanine F factor two or three times per week, and after that I continued adding Benefix factor, according to the advice of my personal haematologist. I administer it once a week. Since I have been on the self-therapy regime, the number of bleedings has decreased significantly and these only occur rarely. I recommend the self-therapy regime to all haemophiliacs, if they still haven’t decided for it or still hesitate about what to do.

Undoubtedly, haemophiliacs should be grateful to all medical staff and to those who look out for our best interests in the form of various educational activities, lectures, excursions, camps. I have particularly fond memories of the camps in Prekmurje and Planica. A great number of haemophiliacs attended each time and we created strong friendship bonds. We are also very fortunate that our country covers the expense for all our medicines and blood-clotting factors, which do not come cheap. When we were in contact with foreign haemophiliacs, they all pointed out what a great system of care we have and how they wished they had a similar system.

As far as life beside my work and family is concerned, my favourite activities are basketball and table tennis. Of course, I am very careful and I use elbow rests, whenever I engage in sports. I believe I would actively engage in basketball practice, if it weren’t for my health issues. Many people know that I am a sports fanatic and I try to see as many games and matches as possible. I like spending time with my friends, attending field trips and performances with them, ...

This year I also became a proud uncle of my little niece Žana. Occasionally I look after her and provide other assistance to my sister, whenever she needs it.

I sincerely hope that in the future haemophiliacs in Slovenia will be taken care of as well as we are now, and that administrating the factors will become even more convenient, so that we won’t have any obstacles in our everyday lives due to haemophilia.

It’s important that we haemophiliacs unite and share our opinions and experience.

We sincerely thank Matej for sharing his life story with us. It is evident from his story that Matej is a responsible haemophiliac, interested in new findings and information regarding the possible treatment of haemophilia and social contacts in the haemophilic community.

We wish him many frequent friendly encounters in the community and as few health problems as possible; good luck, Matej!