Hemophilia is a disorder in which the blood's normal ability to clot is absent. It's a problem most prevalent in males -- about one in 4,000 males are born with the disorder. Without treatment, hemophiliacs can bleed to death after suffering only minor cuts or injuries. Modern treatment is expensive, however, and sufferers are sometimes stigmatized because society doesn't know much about the affliction. RFE/RL reports from Kosovo, where young hemophiliacs face an even harder struggle.
Prague, 19 June 2003 (RFE/RL) -- "No, there are no happy moments in my life. Never. I don't know. I can't."
That's what a 16-year-old Kosovar boy, suffering from hemophilia, has to say. For years, he has been a regular patient at a pediatric clinic in Pristina. He spends most of his time in the hospital room he shares with other hemophiliac patients.
"All I remember is being a patient in hospitals," he said. "Due to the economic situation, I cannot buy anti-hemophiliac human protein, which is very expensive and can be bought only abroad. I often have hemorrhages, especially at the knees, which has caused deformation of my legs. Now I can't walk."
That's Jeton's testimony. Jeton is not his real name. He is afraid of what others will say. He doesn't want to be the object of cruel jokes.
"I play with friends, although I often can't because I'm sick," he says.
But for the past year, Jeton has stayed home because he cannot walk. In his condition, visits to the hospital are a common occurrence.
"I arrived at hospital a week ago. Last time, I was here for a year. I had internal hemorrhaging. I was in a desperate need of anti-hemophilia human protein, but we could not find it," Jeton says.
The difficulties for Jeton and others like him start at birth.
Nazim Ymeri, a pediatrician and the head of the hema-oncologic clinic in Pristina, explains the difficulties facing a child who suffers from hemophilia.
"First of all, giving birth to a hemophiliac baby is difficult and full of risk," he says. "If it is a complicated birth, [the baby] can suffer internal hemorrhaging. The risk of hemorrhaging is present during the entire birth process. The main problem with the low level of blood coagulation ability is the lack of Factor 8, which is a blood component. In this case, people used to say blood cannot congeal. As a hemophiliac child grows up, he faces risks, such as when a child tries to take his first steps. Rough contact with things can cause a hemorrhage, which can sometimes end tragically."
The mother of one patient at the pediatric clinic explains that all three of her sons suffer from hemophilia. She says that since the birth of her first son, she has never had a peaceful moment. She can only remember days and nights spent in the hospital. Having a baby is a wonderful moment for most parents. For her, it has meant only pain and tears. "When my oldest son was 11 months old, he had a hemorrhage. Then we realized that he was hemophilic," she says.
But being a hemophiliac in Kosovo does not mean health problems alone. Patients are also ignored by society, which knows little about the disease. Most of the people RFE/RL asked in the streets of Pristina had never heard of hemophilia, with the exception of a medical student:
Question: "Do you know what hemophilia is?"
Question: "And you?"
Answer: "Believe me. I have no idea."
Question: "Do you know what hemophilia is?"
Answer: "It's a disease caused by lack of [blooding-clotting protein] Factor 8 in blood, and it is transmitted genetically from the mother."
Hemophilia, which is primarily found in males, is called the "royal disease" because it was often found in royal families around Europe. But for children living with hemophilia in Kosovo, their lives are anything but grand. Jeton could not even attend school and only finished the second year at elementary school."
At the same time, having a hemophiliac child costs a lot of money. The mother who has three hemophiliac sons is a widow and tries to survive on social assistance.
The main treatments for hemophilia involve the infusion of human plasma or genetically engineered human protein. The latter is the method used in Western countries but its availability is limited in Kosovo due to its high cost. Treatment with human plasma often leaves patients more vulnerable to other infections, such as hepatitis or HIV.
Doctor Ymeri explains: "Until now, the risk of infections has been quite low. But actually, with the free movement of people, the risks are becoming more evident. It's the same in the rest of the world. Based on preventive measures at blood centers and hospitals, we try to limit these risks as much as possible. There have been no cases of any hemophiliac patient infected with hepatitis or HIV, until now."
Kosovo has no organizations to help the public learn about the disorder and change mentalities. People in Kosovo are hesitant to talk publicly about hemophilia.
Until society becomes better informed and more conscientious about hemophiliacs and their difficulties, children who suffer from the disorder will spend their time shuttling between their home and pediatric clinics, where the doctors are their best friends and last hope.
Although the number of young hemophiliacs in Kosovo is small --- around 100 -- their pain is great.
Parents also suffer. Hemophilia is a genetic disease transmitted by the mother. There has been only one case in the last two decades in which a husband asked for a divorce because he considered his wife responsible for their son's affliction.
The mother of the three hemophiliac sons was asked if she suffers from any disease: "No, I suffer only from sadness."
Hemophiliacs are a secluded minority in Kosovo. They are boys who have never played football. As Jeton explains: "I don't explain to others. I know that the majority of people do not understand what I'm suffering from. So I don't explain to anybody. They don't understand."
(This story was originally broadcast on 1 May by RFE/RL's South Slavic and Albanian Languages Service.)