Sofia (Bulgaria), Haemophilia B

Years of pain and bleeding forced 51- year- old Boyan Boyanov to live his life trapped in-between four walls. Thanks to self-medication he can now walk outside his own door, but Bulgarian bureaucracy is still putting a spanner in the works. 

”The first thing I noticed when I entered the building was the number of stairs leading up to the apartment,” says Goran Kapetanovic, the director behind the film about Boyan Boyanov.

Goran Kapetanovic arrives in the historical city of Plovdiv on a sunny, summer day. Roman amphitheatres stand side by side next to Orthodox and Catholic churches, while Turkish architectural influences can be seen throughout he city.

In the centre of the city, in an attic apartment on the top floor, Boyan Boyanov lives with his mother. His haemophilia has led to a permanent injury in the knee: a common problem for Bulgarian haemophiliacs of his generation.

Since there was no elevator it was almost impossible for him to go outside the apartment. Moving was not an option, especially considering his economic situation,” says Goran Kapetanovic who also explains that Boyan Boyanov had been unemployed for a prolonged period of time, despite having two degrees in journalism and philosophy.

”He is an otherwise healthy person who has been forced into unemployment, which of course is an economic strain, but has also made him more introverted. It’s important to remember that there are different aspects of haemophilia, it’s not just a physical condition,” says Goran Kapetanovic.

Just like many other Eastern European countries, Bulgaria had problems with the transition from communism to capitalism after the fall of the Berlin wall. Medical conditions that required regular follow-up fell through the cracks, which became a problem for people suffering from haemophilia.

“Before proper institutions were formed the situation for haemophiliacs was horrible. Medicine and prophylaxis were introduced very late and many haemophiliacs died since they didn’t get treatment on time, says Goran Kapetanovic.

A prisoner in his own house

 

Boyan Boyanov had to live his first years without treatment, and later on bureaucracy created obstacles preventing him from living a normal life.

”Every month he has to go to the hospital and prove that he is still sick, and these are simple things that could easily be solved. Haemophilia cannot be cured, which means that there is no need to be assessed every month in order to receive medicine,” says Goran Kapetanovic.

“The problem is the lack of knowledge about haemophilia, as well as the attitude from the authorities that question people rather than trying to find ways to help them,” says Goran Kapetanovic, who noticed a vast difference in treatment between Eastern and Western Europe. However the biggest difference, he continues, is the one that exists between cities and the countryside.

“If you live in a smaller village in the countryside it’s a lot harder to have contact with organisations, reach hospitals, etc.”

When they first meet, Goran Kapetanovic’s main goal is to try to get Boyan Boyanov out of the dark dim attic apartment. So he helps him down the stairs, and takes him for a walk through the city.

“Since he never leaves the house I wanted to get him outside and have him show me his city. I thought it would bring out a more personal story,” says Goran Kapetanovic, who is also originally from the Balkans, which meant that the two share the same history.

“We could speak in our mother tongue since the languages are very similar. In that way I could ask different questions and understand all the nuances in his story.”

“It was the first time that I had heard of all the prejudicesd and the ignorance that haemophiliacs
face,” says Goran Kapetanovic.

Even though Boyan Boyanov has been through a lot of difficulties due to his condition, he has, since he started prophylaxis the self-medication five years ago, found a balance in life.

“He has become happier, more independent, and sees more opportunities in life. He doesn’t feel as psychologically sick as before, says Goran Kapetanovic.