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.
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.
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!