Living with hemophilia means more than periodic visits to the doctor and taking regular medication. Like many chronic diseases, hemophilia requires people to take intentional steps in their lives to reduce the risk of complications and live as healthy a life as possible.

The Centers for Disease Control and Prevention (CDC) and the National Hemophilia Foundation’s National Prevention Program promote these five major tips for people to follow for healthy living with hemophilia A:

1. Get an Annual Comprehensive Checkup at a Hemophilia Treatment Center

Approximately 100 hemophilia treatment centers (HTCs) exist throughout the United States and Canada. These centers let patients receive all their hemophilia-related healthcare in one place. (1) The team of healthcare providers at HTCs may include a hematologist (doctor of blood diseases), an orthopedist (to treat joint symptoms), a pediatrician (for children), a nurse, a physical therapist, a social worker, and a dentist. You can use the CDC’s directory of HTCs to find the ones nearest to you.

Research has shown that people with hemophilia who receive care at an HTC have better long-term health outcomes and are less likely to die early from their condition. One study of 3,000 boys and men with hemophilia found that those receiving care at an HTC were 40 percent less likely to die from a problem related to their hemophilia compared with those not getting care at an HTC. (2) Another study found that people using an HTC were 40 percent less likely to require hospitalization for bleeding complications than those not using an HTC. (3)

2. Get Your Hepatitis A and Hepatitis B Vaccines

Hepatitis is a viral infection that causes inflammation in the liver. There are several different types of hepatitis, but vaccines to prevent it only exist for types A and B.

The hepatitis A and hepatitis B vaccines are both currently recommended on the CDC’s childhood immunization schedule. Still, these are relatively new additions, so many adults today did not receive these vaccines in childhood.

The hepatitis B vaccine was added in 1994, and the hepatitis A vaccine was added in 2000. (4, 5) People born before 2000 likely did not get at least one of these vaccines in childhood. The hepatitis A vaccine involves two injections given six months apart. (6) The hepatitis B vaccine is given as three or four injections over a six-month period. (7)

3. Treat Bleeds Early and Adequately

Basic first aid should be used for mild, everyday cuts, but people with hemophilia and their caregivers and family members should be aware of how to manage more severe bleeding that might occur.

Plan ahead for situations that may put you at risk for bleeding. For example, if you will need a medical procedure, such as dental work, that could cause bleeding, be sure your provider knows of your condition and is prepared to manage extra bleeding. A medication called fibrin sealant can be put directly on lesions or incisions to encourage clotting and help the wound heal. (8)

You can reduce the likelihood that you will need dental work by taking good care of your teeth through daily brushing and flossing.

4. Exercise and Maintain a Healthy Weight to Protect Your Joints

Contrary to what some may believe, hemophilia does not prevent people from engaging in physical activity. While avoiding injury from exercise is not always possible, the risks of being physically active are substantially outweighed by the benefits for people with hemophilia.

Exercise strengthens muscle, and strong muscles protect a person’s joints and can reduce the risk of spontaneous bleeding. (9) Research has found that joint disease is one of the biggest factors that negatively affects the quality of life for people with hemophilia. (10)

Playing sports is a good way to build muscles and improve both physical and cognitive (mental) endurance. A person with hemophilia who wants to play sports should consider how severe their specific disease condition is and which sports interest them. Some sports, such as partial- or full-contact sports like soccer or football, are likely to be too risky. Other sports, such as tennis or swimming, will offer more benefit than risk.

5. Get Tested Regularly for Blood-Borne Infections

Viruses such as HIV and hepatitis are no longer risks in blood transfusions or blood products in the United States. Still, any type of blood-borne infection poses greater risk and complications in someone who already has a blood disease. The sooner a person with hemophilia is aware of a possible separate blood infection, the more quickly they can receive treatment.

How to Protect Children With Hemophilia A

Bumps, cuts, and bruises are rites of passage for most children, especially as they grow older and become more curious and adventurous. But for a child with hemophilia, even small bumps can be more dangerous than they might be for a child without hemophilia.

Parents of children with hemophilia can take several steps to reduce their child’s risk of getting severe bruises or cuts:

• Ensure children always wear a helmet when riding a bicycle, tricycle, skateboard, scooter, or similar vehicle. Kneepads and elbow pads are also recommended.
• Always properly fasten safety belts and straps in any piece of furniture that your infant or toddler sits in, including highchairs, car seats, and strollers.
• Toddlers love to explore their environment but are often unsteady on their feet. Be sure furniture in the house does not have sharp corners or that the corners are adequately padded.
• Keep scissors, knives, needles, tools, and other sharp objects out of your child’s sight and reach. Keeping them out of sight reduces the likelihood that your child will try to climb to get a sharp or dangerous object as well.
• Playing outside and on playgrounds is a healthy way for children to develop strong motor skills, muscles, and even thinking skills. Still, examine all playground equipment for any safety concerns.

Educate teachers, babysitters, relatives, and other caregivers about how to manage injuries and bleeding in your child. Keep the freezer stocked with popsicles, which can be helpful for minor bleeding in the mouth, and place a medical ID bracelet on your child so that first responders and others know of their condition.