“I wish I could go back and tell my younger self to take my hemophilia more seriously,” says Sean Jeffrey, now 28, of Missoula, Montana. As a middle schooler, his adherence to his treatment protocol was hit or miss. “Sometimes I just wouldn’t infuse and then I’d go play tackle football at recess.”
Jeffrey says he didn’t start to make adherence more of a priority until he was 16. “I got more mature, and my joints started to get worse,” he says. “I really wanted to keep playing sports, so I kept infusing regularly so I could allow myself to do those things.”
Taking responsibility for your own care is an important milestone for anyone with a bleeding disorder, but it can often be challenging when you’re also being bombarded with the physical, psychological and social changes that come with young adulthood.
Research shows that many young adults are likely to struggle with adherence issues. One 2016 study by researchers at the Northern Regional Bleeding Disorder Center in Michigan revealed that while 17% of study participants between ages 13 and 17 were nonadherent to their prescribed treatment regimens, that number jumped to 47% for participants ages 18 to 25.
“We will see kids who have been treated all their lives at hemophilia treatment centers, but as teens learn to treat themselves. With this independence, teens may skip a dose,” says Lisa Littner, MSW, LISW-S, hemophilia grants manager and a former social worker at the hemophilia treatment center at Cincinnati Children’s Hospital. “If there is no bad result, they think, ‘I don’t need this, I’m OK skipping once in a while.’ But other times, they can have a severe bleed.” Missing doses increases the chance of bleeding and thus long-lasting joint damage.
Neglecting treatment may even have insurance implications, says Marla Feinstein, senior policy and healthcare analyst at the National Hemophilia Foundation. “Insurance companies request infusion logs because they know the long-term costs to patients who don’t follow their regime,” Feinstein says. “Those bleeds you get when you don’t stay on track will add up to increased costs down the road.”
How to Get Back on Board
If you have trouble staying compliant with your recommended treatment routine, try these tips:
• Remind yourself
Post notes around your home that remind you to infuse.
• Use technology
Set up calendar alerts, or get an app that helps you track your doses and bleeds.
• Find an infusion buddy
“Is there someone you can check in with and say, ‘Hey, I did my factor today; did you do it too?’” says Sean Jeffrey, of Missoula, Montana, who has hemophilia.
• Educate yourself
Learn why you need to adhere to your protocol. “I know your treatment team can be annoying and frustrating, especially when they are telling you that you can’t play a sport, but know that they are doing it for a reason, that they have your best health in mind,” Jeffrey says.
• Connect with peers
Others in the bleeding disorders community can share advice about how they stay compliant. Jeffrey, for example, went to bleeding disorders camp. “I think it’s the most beneficial thing kids with hemophilia can do. You become independent, learn to take care of yourself, find other kids like you and know you are not alone,” he says.
• Connect with elders
At chapter events or camp, talk to slightly older people who have a bleeding disorder. Hearing what they have gone through can be eye-opening.