You Cannot live in fear
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."
Ed also has a sister, Ann Marie. Ed remembers that while his parents worked, his sister would make dinner. He said, "she was amazing." She would sit with her brothers. If they got a hip bleed, "which was the worst", she would sit with them until it felt better.
Ed followed in his maternal grandmother's footsteps, who started the Delaware Valley Chapter, by getting involved in the hemophilia community. He found himself in the right place at the right time and developed a relationship with Congressman Newt Gingrich. They worked together on a bill about pre-existing conditions and lifetime caps with insurance companies. He went to see Speaker Gingrich very shortly after he lost his second brother, Michael. He went to talk to the Speaker and ask for him to help the community pass the Ricky Ray Hemophilia Relief Act. Ed's story touched Speaker Gingrich and him losing both his brothers to contaminated factor. He continues his work with legislation to enable qualified charities to help pay for health insurance for people who cannot afford it. In addition to that, Ed also served on the advisory committee on blood safety and availability. President Obama appointed him for this position.
Ed is married to his wife Carolyn of 28 years, and they have a daughter, Killeen. Killeen is now in college, and Ed is so very proud of her. To avoid any chance of passing on his HIV/AIDS, they utilized artificial fertility techniques. His greatest pastime is spending time with his wife and daughter.
Ed is passionate about his work with Hope for Hemophilia. He would encourage others to be all you can be: let nothing hold you back. He stated, "Your joints work; you can play sports. You will bleed, but you will, also, clot. You cannot live in fear, don't let it scare you. Moms are scared if it's not in their history or if they have no experience with it. We have enough to fear with the pandemic. This is just hemophilia. And a little HIV, but we've got that covered. Learn from what we went through and be everything you can."