FEIBA Support / Doctor Q&A
We sat down with a hematologist who answered some commonly asked questions about inhibitors.
Below is his advice on living with inhibitors, how to avoid bleeds, and more. Consult your doctor for advice specific to you or your child.
- Are there any special things inhibitor patients should do to take extra care?
- How do patients and caregivers deal with inhibitors?
- How does a hematologist explain inhibitors to patients and their families?
- How does FEIBA help to control bleeds in patients with inhibitors?
- How important is family support in dealing with inhibitors?
- How can patients have an active life?
Are there any special things inhibitor patients should do to take extra care?
The safety concerns for people with inhibitors are almost the same as those for other people with hemophilia—with a little extra caution.
Changes like wearing protective pads are an easy way for families and patients to lower the risk of bleeding. Over time, patients become used to changes in playtime or sports, and the changes become normal for them.
How do patients and caregivers deal with inhibitors?
It depends a lot on a patient's age. For toddlers, protection such as knee pads, elbow pads, and soft helmets is an easy way to start lowering the risk of bleeding. Caregivers should also be careful that toddlers don't play too rough.
For kids in school, their teachers should be educated to make sure they know about their students' hemophilia and inhibitors.
Adolescents are often trying to find their place in life, and they sometimes take risks. It can be helpful for them to see role models who control their condition and still have fun hobbies and interests.
How does a hematologist explain inhibitors to patients and their families?
Sometimes hematologists call the inhibitors "erasers" that "erase" the factor in a patient's therapy. At first, most families feel helpless, but hematologists help them see that inhibitors can be managed with the right therapy.
How does FEIBA help patients with inhibitors?
FEIBA is an FDA-approved treatment of bleeding episodes in hemophilia A or B patients with inhibitors. When a patient has hemophilia with inhibitors, the most important thing is to stop bleeding. Everything else comes after that.
How important is family support in dealing with inhibitors?
Family communication is very important. Parents and children both feel more comfortable when they talk about the things they need to do. Also, kids who have hemophilia with inhibitors should spend time with peers and friends to keep from feeling alone.
How can patients have an active life?
Staying active is important. Patients just have to learn what to expect. Kids can play sports like swimming and golf instead of wrestling or football. Fitness is helpful and good for everyone. Hiking and yoga are other examples of sports that can help patients stay active while keeping the risk of bleeding low. Not all sports, games, and exercises are right for all people. Talk to your healthcare provider or nurse to find out which activities are better for you to engage in, and what special care you should take for certain sports or exercises.