Living with Hemophilia

Nikolay(right) with his Airsoft team

When my wife's brother was born, there already was recombinant that he could take. However, it costs $3000 a shot. For a poor family this is unthinkable amount of money especially if the exchange rate is something like 32 rubles for a dollar and an average monthly income is $450. My wife's brother, Nikolay named after his grand father, wore knee pads sown by my mother-in-law since he was one. Nikolay's parents lived in constant fear that he might get injured and bleed out. Especially dangerous were the winters. There is no salt put on the roads in the winter in Russia, therefore, if Nikolay slipped and fell it could cause him to end up in a hospital or even worse. Once, he slipped and bit his top lip very hard. He kept bleeding and, while during the day his parents could watch him and wipe off the blood, at night he bled uncontrollably. Every morning he woke up with his lips black from blood. In a few days he was hospitalized. He was in the hospital for 10 days getting blood transfusions, but without recombinant factor it was difficult to stop the bleeding. When the bleeding had stopped, he was released, but as soon as he got home, he smiled and the bleed opened again. He was in and out of the hospital three times in the next two months. The bleed kept opening up and blood transfusions were not helping. The cut on his lip was tiny, but it could very well cause him to bleed out and die. Finally, my father-in-law spoke to the doctor himself, and Nikolay got stitches to stop the wound from opening up again. Finally, when Nick was 7, my wife's family moved to the United States where Nikolay receives the preventive recombinant treatment. My mother-in-law gives Nikolay infusions of factor VIII 3 times a week, allowing him to have an almost normal life. He is not permitted to play what they call "contact" sports i.e. football, basketball, etc., so he plays Airsoft with his friends. Airsoft is similar to paintball only with bee bees. Nick and his team win many of their battles. Unfortunately, Nick had developed antibodies to factor when he was 9. The doctors increased his dosage and it seemed to have helped the problem. Another worry my parents-in-law have is Nick's weight. His weight puts too much pressure on his vessels and joints, which can cause an internal bleeding that is very hard to detect.