Retired, Chicago, IL
For me, it was trial and error, but for kids with hemophilia now, there is much more support available and hope for the future.”
Tell us a little about yourself.
My name is Kevin. I am 60 years old and I live in Chicago, Illinois with my sister, Pearl. My wife, Joyce, lives in Mississippi. I am eager to move down there to be with her, but I have yet to find a hemophilia specialist near where Joyce lives.
Before I retired in 2010, I worked at Stroger Cook County Hospital in the Department of Pathology and Hematology as a Medical Technologist. It was certainly challenging to work and be sick frequently, but it was also rewarding because my work in cancer, HIV/AIDS, sickle cell anemia, and a range of bleeding disorders was so relevant to my personal life.
Does your family have a history of hemophilia B?
I am one of 8 children. My siblings and I were born and raised in Chicago. I used to think I was the only one in my family to have hemophilia. Then, I learned that my uncle had hemophilia, but it was not discovered until very late in his life. I was diagnosed with hemophilia at 18 months old after I cut my hand on a broken glass. When the bleeding would not stop, my mother brought me to the hospital. They tested my blood and I was diagnosed with hemophilia. It wasn’t until I was 9 years old and my doctor ran a factor assay that I was diagnosed with Hemophilia B, or Christmas disease.
What was growing up with hemophilia B like for you?
As a child, I often had bleeds. I stayed in my room a lot to prevent them, but I would still end up with bruises and swollen joints, especially in my knees and ankles. Even tiny cuts and loose teeth — common events for a young child — would require a trip to the hospital for treatment. The hospital became like a second home to me. Whenever I had a bleed, it usually required at least 3 days in the hospital to resolve.
To try to make fewer trips to the hospital, my mother learned how to do my infusions. She told me that, as a child, I hated needles and it was very hard to infuse me. She would have to hold my arms, and sometimes used a splint to keep my arms straight so that she could do my infusions.
When I was old enough to go to school, I was initially enrolled in the Chicago public school system. They kids were pretty rough and I would often come home with cuts and bruises. My physician and hematologist told my mom about a school for children who were physically challenged. By 3rd grade, I was enrolled in that school. My classmates were children with multiple sclerosis, heart disease, or other conditions that required them to be more careful than other children.
I was very fortunate to get such a quality education. At my school, there were only about 15 children in a class. It was also very multicultural and accepting of everyone.
The teachers and counselors taught us not to be ashamed and not to think that our ailments were our fault. We were not freaks of nature, as each of us had been called at some point in our lives; we just had different problems than other kids. It was so beneficial to be around other kids with physical challenges — it seemed like a natural environment for me and I had a wonderful experience there.
Tell us about your treatment journey.
I was taught to self-infuse when I was around 15 years old. My brother, who was a paramedic, came to the course with me to learn how to give infusions. When we got there, though, he froze up. He said it was too hard to do this with a family member. Regardless, from that point on, I could take care of my infusions at home.
I am now on RIXUBIS prophylactic treatment. Before this, I would infuse on-demand to treat my bleeds. When my doctor suggested RIXUBIS, I agreed and then discovered that it works well for me. And I like that I only infuse 2 times a week.
I used to go to physical therapy, but my doctor and I realized that it was actually more damaging than beneficial for me. I know it is very important for me to stick to my prophylactic treatment regimen. It is also important for me to get plenty of rest when I get injured. That helps me to recover.
What do you do to stay healthy?
Even though I know that I need to rest, I also know that it is important to be active. I like to do low-stress exercises such as swimming, sit-ups, and pushups. As I've gotten older, it's started taking me more time to recover from bleeds, so I really pay attention to how much stress I am putting on my body. I have had some joint damage because of bleeding episodes over the years, so my range of motion isn't quite what it used to be. I still exercise to maintain my muscle tone and flexibility as much as I can.
I also try to eat healthy foods. I eat a lot of vegetables, and I really enjoy smoothies. When I go to my hematologist, we discuss how I'm progressing and any problems I may have encountered, and whatever problems may arise. They also monitor my cell counts to make sure I am in a good range.
How did growing up with hemophilia B influence you as an adult?
Even though I did not get to go to hemophilia camp as a child, I was asked by the director of my local camp when I was around 16 or 17 to attend as a counselor. That is really when I first started getting involved in my local hemophilia community.
Now I am in the program called the Blood Brothers. I attend seminars and workshops throughout the year, and I also like to attend state and national conventions. In some of the panels that I have participated in, parents have a lot of questions for me and definitely take note of my age. For me, it was trial and error, but for kids with hemophilia now, there is much more support available and hope for the future. Being involved in my community has been one of the most rewarding things for me. A lot of parents have to deal with many issues similar to the ones my mother dealt with. Being able to speak to people and share my experiences really makes me feel good. I like to tell people that, even though I couldn’t be a football player, I have been able to use my mind to create a fulfilling life.
Living with hemophilia has taught me, most of all, patience. Many times, I was in a rush to get back to school or work after being injured. I had to learn that I can't heal on my timeline; it is hemophilia's timeline for letting my body heal. I have met so many people through my involvement – especially other Blood Brothers who have taught me so much. Through them and my own experiences, I have learned to live a modified life. I use my medicine religiously, always keep my doctor informed, and I try my best to exercise and eat healthy.
Having spent much of my life on a sick bed, being able to get up and go to a job and giving something back to the community gives me a sense of importance and fills a void. Even though I've had a lot of problems throughout my life, I've also felt encouraged to get more involved and do as much as I can to give back.
Not all activities are appropriate for all people. Consult with your healthcare provider to determine which activities are appropriate for you.