Dan, now 60, has nothing but a positive attitude about the effect that hemophilia has had on his life, even though he just underwent his sixth joint replacement surgery. “There are lots of things I wouldn’t have done otherwise,” he says, “such as racing cars, flying airplanes, and cross-country bike riding.”
His health also took a turn for the better when he was spontaneously cleared of hepatitis C, which he contracted early in his life due to treatment for hemophilia. This occurrence is extremely rare, and he found it hard to believe at first. “It had never been treated, and the reason we even found out it was cleared was that I was working to get it treated. They did a test to find out what kind it was, and they couldn’t find it. It was just gone. Then they checked again and got the same result.”
He considers himself very lucky for many reasons, one being that he has been a strong advocate for his care throughout his entire life. “I don’t know how to stress that enough,” he says, “being your own advocate is the only way to stay alive. Know your options and ‘doctor shop’ to find someone that meets your needs.”
Being a part of the Pfizer B2B Advisory Board has meant a lot to him. “The idea that my opinions matter means a great deal to me. I can see my influence in the publications.” Dan also gives back to the community with his participation in hemophilia camp, leadership, and working with local hemophilia chapters. “Being involved, it’s a much bigger deal than I thought it was. You as an individual can contribute to the community, educating younger people, educating your peers, and you can learn from most of those groups too.”
Dan B, a 55-year-old with severe hemophilia B from Texas, discussed the possibility of surgery with his doctor to help correct the debilitating pain in his elbow and ankles. Five joint replacements later, Dan is now happy about having had the surgeries. Because the decision to have surgery is a personal one, he would encourage you to be your own advocate when it comes to your medical needs.
Despite having endured five joint replacements, cancer treatment, and most recently, a cartilage tear in his shoulder, Dan B continues to maintain a positive outlook on life and reminds himself every day how lucky he truly is to be alive.
Dan B feels that part of the reason he has been able to reach the “ripe old age of 55” is due in part to caring and generous individuals within the hemophilia community. His advice is to never forget those who helped you get where you are today. Dan says, “You owe it to all the people who helped you survive to make the most of what you have and to give something back.” Volunteering in any arena can touch the lives of others and gives you a sense of pride and accomplishment. It is also important to realize that once your generation is gone, so are many lifetime collections of wisdom and experience. Some of these may never be known by the younger generation growing up in such a medically advanced world. Tell your story and be remembered.