Husband and father, OH
One time I got into a fight on the school bus; when I woke up the next morning with a painful face full of bruises, I learned not to get into fights anymore.”
Does your family have a history of hemophilia B?
I am the oldest of 4. I have a sister, Michelle, who is 2 years younger than me and twin brothers, James and Jesse, who are 3 years younger. Neither of my brothers have hemophilia and, as far as I know, my family has no history of hemophilia.
When were you diagnosed?
I was diagnosed as soon as I was born when I was circumcised, and the bleeding would not stop. They had to rush me to Dayton Children's Hospital for treatment.
Until I was about 6 years old and started kindergarten, every time I had a bleed, my parents would have to drive me to Dayton for infusions. Then, my dad took classes at the hemophilia treatment center (HTC) and learned how to give me infusions when I had bleeds, which fortunately were infrequent—maybe 1 a month—when I was very young.
My bleeds increased as I became older and more active. My parents kept a watchful eye on me but didn’t restrict me or treat me any differently than my sister and brothers.
What was growing up with hemophilia B like for you?
Growing up, I didn't know anybody who had hemophilia, but I didn’t really think too much about it. I behaved like a typical kid and did some stupid things. One time I got into a fight on the school bus; when I woke up the next morning with a painful face full of bruises, I learned not to get into fights anymore. Everyone in school knew I had hemophilia. My teachers watched me but did not restrict me. When I got hurt on the playground or at school, they would call my parents who would come get me and take me home for an infusion.
One of my school activities was a mandatory swimming class. Because of bleeds into my knee joints, my knees were swollen and leg muscles were weak. My knees looked like olives on toothpicks.
When kids asked why my knees were so big, I became more conscious of having a condition that the other kids did not have. I also spent a lot of time during school years on crutches because of difficulty walking after pain from bleeds. In fact, I was on crutches so frequently that some kids thought I was faking the need for crutches.
On the whole, though, teachers and kids accepted me; as I think back, I'm really proud of the kids and teachers at my school. I was not treated differently. And despite needing crutches from time to time to get around after a disabling bleed, I did not miss much school, and I was able to keep up with my classmates.
Tell us about your treatment journey.
I have been treated at the HTC at Dayton Children’s Medical Center since I was first diagnosed. When I was a kid it seemed like an all-day event. Now, I meet with the doctor, nurses, physical therapist, and social worker for about an hour or two once a year. They do blood tests and talk to me about my bleeds and what is going on with my life and family.
I never had the opportunity to go to a hemophilia camp, but my doctor and nurse taught me how to do my own infusions when I was about 16 years old. Then, I became responsible for my own on-demand treatment whenever I had a bleed.
Until recent years, infusing was a really big deal. Getting all the stuff together and taking the time to infuse could take an hour or more. It was a time-consuming hassle, and some weeks I would have 1 or more bleeds.
My bleeds were usually painful and debilitating. I had to have both knees replaced because of damage to my joints caused by bleeds. When my left knee was replaced at 22, I bounced right back and was able to walk with a cane within 7 weeks. But when my right knee was replaced at 29, recovery was rougher. I had lots of pain and swelling, and I needed more extensive physical therapy.
Now, I am on prophylactic treatment with RIXUBIS infusions twice weekly. I like that I can store it out of the refrigerator for up to 36 months. I also like RIXUBIS because it has a small infusion volume, and it seems to work for me in decreasing my bleeds. Since I have been on RIXUBIS prophylactic treatment, I have had fewer bleeds.
What do you do to stay healthy?
I like to be physically active. I go to the gym regularly, which I really enjoy. My doctor said that doing exercises to strengthen my muscles and increase flexibility is good for my joints.
I also like to swim, hike, and go camping with my family. In fact, we recently bought a camper. It's one of those pop-up campers that opens up like an accordion. We made a few trips in the camper last year and are looking forward to traveling with it again next summer.
Exercise helps me feel stronger, control my weight, and increase my endurance. I am able to do more, like run after the kids.
My wife, who is big on eating healthy, encourages me to eat healthy. I have been trying to cut out soda, which I think will be good for my weight. To a person with hemophilia, weight control is important because being heavy adds stress to knees, ankles, and other joints, which is a big deal. There are lots of benefits to eating healthy.
What is your support system like?
My wife has been active in the hemophilia community, and she has been getting me more involved. We go to fund-raising and education events. Being involved in the hemophilia community has made us more aware of hemophilia issues and resources.
Most of the people I meet have hemophilia A, but with all that we have in common we don’t focus on any differences between hemophilia A and B. Being involved has made me more aware of what others with hemophilia are going through, and it helps me to talk with other people who know what I am going through.
I enjoy the support of the community, and I try to give support in return. I recall meeting a gentleman who has a son with hemophilia and was nervous about learning how to manage his condition and was afraid to let him do anything. I shared my experiences to encourage him.
What has living with hemophilia taught you?
The biggest life lesson that I have learned from living with hemophilia is that we all have something; these are the cards that I was dealt. I have hemophilia, but it is important for me to not let it hold me back or define me. I feel fortunate that advances in treatment are helping me manage my condition. I may need to work to manage my hemophilia, but I do not need to let it stop me from enjoying my life and family.
I am a lot more conscious of health now. When I was younger, I would be with friends hours away from home; when I got a bleed, I was not prepared. I had to push through it without access to treatment for 9 or 10 hours. Now I plan ahead so I am always prepared.
Not all activities are appropriate for all people. Consult with your healthcare provider to determine which activities are appropriate for you.