Ed grew up with three brothers that all had been diagnosed with hemophilia. Each of the three brothers lived with it and learned to have a full life despite their bleeding disorder. He was the middle child. His mother was two years old when Ed's grandfather, her father, died from hemophilia. He also had two cousins that had hemophilia. He stated, "I was never alone." They were a family that believed life should be lived and did not let Hemophilia limit their lives.
Ed and his brothers hung out together. When they developed a bleed, they would stay on the couch with ice unless it was really bad, and then they would go to the hospital. Ed stated his parents were cool. The boys would play sandlot baseball and only had one rule, "if you get hurt, you get the ice packs and go to the couch. No Complaining." He recalls one time that he ran into the front door, and one of his brothers ran into the back door, and both of them were holding their noses and discussing how they got their injuries. They always had a sense of humor related to their hemophilia.
When factor became available, Ed learned to self-infuse at camp. This was life-changing. They could address the bleed without disrupting the family to go to the hospital for cryoprecipitate and have much quicker relief. Since Ed was so efficient at self infusing, he started to infuse his brothers. At that time, the doctor wanted the nurses to do the infusions, but they got a neighbor that was a nurse to sign the form from the doctor, and then he was able to infuse himself and his two brothers.
Ed played ice hockey for two years and didn't tell his parents. His greatest fear, other than his mom finding out, was losing a tooth. This was because "the blood would ooze out while I was sleeping, and I would wake up with my room looking like a Quentin Tarantino movie." And he was afraid of dying from a lost tooth. His hockey career ended after a bad fall on the ice. His younger brother, Michael, was a heavyweight wrestler in high school. After breaking the school record, Michael's pediatrician told the school he needed a letter stating he wouldn't get injured.
Ed picked up guitar while waiting for his bleeds to resolve. This had provided one healthy joint and has given him a life long hobby and pleasure. Ed still plays guitar in a band called Breaking all the rules. The band plays in local sports bars and night clubs. A much more sustainable hobby than Ice Hockey. Ed says, "I wouldn't have missed out on any of my adventures."