Tools & Resources / Doctor Q&A
A Hematologist's Opinion
"Family communication is very important."
Dr. Leonard Valentino, MD, has worked as a pediatric hematologist affiliated with several hospitals in Chicago, including Rush University Medical Center, and is now senior medical director for Shire. During his long career he's treated many hemophilia patients, including those with inhibitors. Dr. Valentino shares his advice on living with inhibitors, how to avoid bleeds, and more.14
- Are there any special things inhibitor patients should do to take extra care?
- How do patients and caregivers deal with inhibitors?
- How do you explain inhibitors to your patients and their families?
- How does FEIBA help 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?
I think 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.
When you would meet with patients and their families, how did you explain inhibitors?
Sometimes we call the inhibitors 'erasers' that 'erase' the factor in a patient's therapy. At first, most families feel helpless, but then we help them see that inhibitors can be managed with the right therapy.
How does FEIBA help patients with inhibitors?
FEIBA is an effective treatment for hemophilia patients with inhibitors. When you have 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?
I am an advocate of staying active. 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 all of us. Hiking and yoga are other examples of sports that can help you stay active while keeping your 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.
Want to find other types of support? Check out our Patient Stories section.