Personalized hemophilia B management: Daily care

Last-updated March 21, 2024, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Creating personalized hemophilia B care is an important part of managing the condition.

Hemophilia B is a bleeding disorder caused by a deficiency in clotting factor IX (FIX). When the blood is not able to clot properly, it can lead to prolonged bleeding, especially after an injury or trauma.

Your healthcare team can set up a treatment plan based on your specific needs and the severity of your symptoms.

Self-care means taking an active role in your healthcare. It includes knowing how to look after yourself, including recognizing early signs of bleeding, how to administer treatment at home or in an emergency, and making informed decisions about your physical activities and lifestyle.

Understanding your condition

The activity level of the clotting factor in the blood determines whether hemophilia B is mild, moderate, or severe.

• In mild hemophilia B, significant trauma or injury, as well as surgery or dental procedures, may cause more than normal bruising and bleeding.
• In moderate hemophilia B, bleeding may start after a minor trauma or be spontaneous, that is, without an apparent cause.
• In severe hemophilia B, there is the highest risk of spontaneous and severe bleeding, which can be triggered by even a minor injury.

Generally, bleeding episodes from hemophilia B are prevented and managed with replacement therapies that supply the blood with the missing clotting factor.

Along with seeing your personal healthcare provider regularly, you can be treated at a specialized hemophilia treatment center. More than 140 hemophilia treatment centers are located in the U.S. and there are at least 25 treatment centers in Canada.

Bleeding prevention

Knowing your likely triggers for bleeding episodes is one way to be proactive in trying to prevent injuries and minimize your risk for spontaneous bleeds.

To help identify your triggers, write down any bleeding episodes and what you were doing when they happened. Also note whether you had to administer clotting factor replacement therapy, including dates, times, and doses. Jot down any concerns or questions for your next healthcare appointment.

If you want to manage hemophilia B treatment at home, whether for yourself or someone you care for, you will need to learn how to administer clotting factor replacement. Clotting factor replacement is used both as a prophylactic treatment to prevent bleeding episodes and as an on-demand treatment when bleeding occurs. Talk with your hemophilia B healthcare team about the right way to administer.

Pain management

The primary goal of pain management in hemophilia B is to promptly address and treat bleeding episodes, which can lead to muscle and joint pain.

Typically, it involves administering factor replacement therapy to restore normal clotting function and stop the bleeding. The sooner treatment is initiated, the better the outcome in terms of pain relief and preventing long-term joint damage.

Rest, ice, compression, and elevation are commonly recommended for managing pain and swelling associated with joint bleeding. Resting the affected joint, applying ice packs to reduce inflammation, using compression bandages, and elevating the limb can help alleviate discomfort.

Talk to your healthcare providers about options for managing pain, including medications. Do not take aspirin or ibuprofen as these medications can increase the risk of bleeding, unless specified by your doctor.

A physical therapist may try rehabilitation techniques to help ease pain. They may also teach you methods for managing pain and preventing injuries when doing daily activities.

Diet and exercise

What you eat can improve your overall health, including supporting red blood cell production, promoting blood clotting, aiding in tissue repair, and minimizing inflammation.

Focus on eating a healthy diet that includes foods rich in iron, vitamin K, as well as essential nutrients such as protein, omega-3 fatty acids, and antioxidants.

Thanks to preventive treatments, people with hemophilia B can consider doing more physical activities and sports than they could in the past.

Discuss safe exercise options with your physical therapist. These may include swimming, walking, gentle cycling, and modified strength training.

High-impact and contact sports, as well as activities with a significant risk of falls or trauma, should generally be avoided.

No matter what activities you decide to do, it pays to take precautions, such as:

• wearing protective gear to reduce the risk of injury
• having an emergency plan in place in case of injury
• keeping a factor replacement therapy kit handy in case of injury
• avoiding sports that can cause head and neck injuries.

Mental health and well-being

Living with hemophilia B can be stressful and possibly lead to emotional challenges.

To help decrease stress, consider:

• trying mindfulness and meditation techniques such as deep breathing
• finding hobbies and activities you will enjoy.

If you feel you need more help, consider talking with a mental health professional who can help you understand your emotions and offer you coping strategies.

Daily routine

Following a regular routine can help you manage daily living with hemophilia B.

A daily routine can help you:

• stick to your treatment schedule to maintain adequate levels of clotting factor in your blood
• keep track of your symptoms to enable timely intervention and adjust treatment strategies
• incorporate exercise to maintain joint flexibility, strength, and stability.

Set up reminders for treatment and appointments with your healthcare team on a calendar or phone app.

Sticking to a regular routine also can help you plan ahead for activities and events to avoid too much physical exertion and putting yourself at risk for potential injury.

Building a support network

Your personal support network may include your healthcare team and family and friends, as well as online or in-person support groups.

Your network can help you navigate healthcare challenges, feel more connected to community support, and boost your overall physical and emotional well-being.

Joining a support group gives you the opportunity to talk with others who have hemophilia B and understand what you’re going through. This can be an invaluable source of emotional support, allowing you to share your experiences, whether as a person living with the disease or as a caregiver.

Support groups also can provide you with practical tips about daily coping strategies for living with hemophilia B, keep you informed about hemophilia B events and gatherings, and suggest other hemophilia B resources.

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.