Living with Hemophilia
If you covered up the green and yellow bruises on Brett Palaschak’s arms, you would never know he was different from any other 22-year-old. The only things that really separates him, he said, are the three 10-minute blood clotting factor infusions he injects into himself each week as part of his prophylactic treatment regimen. The scheduled infusions provide his blood with the missing clotting factor, as a preventative approach used to treat hemophilia.
Roughly 70 percent of hemophiliacs are diagnosed before they turn 1 month old—and one third of those babies are born into a family with no known history of the blood clotting disorder. Brett was just 3 days old when he was diagnosed, and soon after, his mother learned she was a carrier of hemophilia and had passed it to her son. Like so many carriers, she never experienced any symptoms and was completely unprepared to learn her otherwise healthy baby inherited the lifelong disease.
Keeping a toddler safe from typical bumps and bruises was a challenge—Brett spent a lot of time with books and puzzles. But, as he got older, he was able to do just about everything his classmates were doing, with the exception of contact sports.
“Most of my memories of childhood with hemophilia are of my mom injecting medicine into my port (a device implanted to allow access directly into the vein),” he recalled. “I was pretty cautious about doing things with a lot of contact, so I focused on academics and things that were not as demanding of my body.”
Unfortunately, feeling isolated came with the territory of living with such a rare disease. In school, kids would ask him questions like, “If you get a paper cut, will you bleed out and die?” He found the easiest way to cope was to surround himself with others who were experiencing the same struggles. Since the age of 7, he attended Camp Warren Jyrch in Illinois – a camp for children with bleeding disorders that lasts one week every summer. There he was able to bond with hemophiliacs his age and even learn to self-inject himself with clotting factor infusions.
“It helped me realize I am not the only one who has hemophilia, and it felt like that a lot because it is so rare,” he said. “At school, you always have to explain what hemophilia is to your friends, but at camp you meet people and you don’t have to explain. You feel a bond because of it.”
Now, a philosophy major in his senior year at the University of Florida, Brett has become an advocate for hemophiliacs on many levels — he is now a counselor at Camp Warren Jyrch and also has a strong interest in the research aspect of hemophilia, prompting him to approach Dr. Roland Herzog, a professor of pediatrics, microbiology and molecular genetics, to volunteer in his laboratory at the UF Genetics Institute.
“Working in the lab has provided me with real insight into what we can expect out of gene therapy for hemophilia,” he said. “I’ve been able to see how hard these people work—and not for any reason other than the fact that they are good people who want to improve the lives of hemophiliacs.”
Now, in his fourth year in the lab, Brett’s volunteer position has turned into a part-time job, which will prepare him to become a lab assistant. He said it allows him to see firsthand the progress of treatment, which is “getting closer to genetic treatment while developing longer-lasting factors, which means less infusions.”
Aside from administering his own infusions, Brett sees Dr. Marc Zumberg at UF Health Shands Hospital once each year for treatment.
“The entire time I’ve been at UF Health Shands, everyone has been immensely helpful and accommodating to my needs,” he said. “It’s been really nice having Dr. Zumberg, specifically, because he really listens to me and understands how much I know about my body in terms of how I feel when a bleed is about to occur.”
After 22 years of life with hemophilia, Brett knows when he is about to experience an internal bleed, which he said is not that often as long as he infuses. In the grander scheme, he sees quick injections as a small price to pay for everything he has gained. Self-injecting taught him to be self-sufficient at an early age, and he matured faster as a child because of coping with such a serious disease. It also gave him the opportunity to meet people through Camp Warren Jyrch and the National Hemophilia Foundation who have become instrumental in his life.
“In a way, those people make it worth it,” he said. “Having hemophilia can seem bad — and it is bad sometimes. But, overall, I would rather have it than not.”