Living with Hemophilia

Nikolay Parvenov

My mother-in-law with her father and brother the year he died

My wife's family moved to the United States from Russia 10 years ago. Her younger brother has hemophilia A in severe form. My mother-in-law often says that his blood is like water. He wasn't diagnosed with hemophilia until he was a year old when he started having severe bruising on his knees. My mother-in-law's father had sever hemophilia A as well, and as it should happen, she carried the faulty gene giving it to my wife's brother. My mother-in-law's father died from bleeding out when she was 6 years old at the age of 35. He was a middle school teacher, a kind and gentle man. He was very strong, but could not use much of his strength due to the fear of his blood vessels rupturing. Once, my mother-in-law often reminisces, he hit an oak table with his fist and the table broke in half. He had severe joint pains in his knees, as the treatment for hemophilia was, and still is, scarce. He bled often into his knees. The only thing you could do to treat hemophilia at that time was blood transfusions if a severe bleed occurred. He died because he lifted a heavy log which caused a severe internal bleeding. My wife's family lived in a small town at the time and the blood for the transfusion needed to be brought over from a bigger city three hours away. The doctor told my mother-in-law's mother that she shouldn't go to bring it over because she won't get back in time anyway. For my wife's brother, who was born 30 years later, the situation did not get much better.