Optimising haemophilia care after diagnosis
Key aspects of knowing how to manage your haemophilia include building a strong relationship with your care team, learning how to recognise and respond to bleeds, and planning for your future healthcare needs. These are all important for optimising your care and living a healthy, active life.
Understanding haemophilia: Empower yourself with knowledge
The first step to managing haemophilia is understanding the condition and the potential complications. As you learn more, you will be better equipped to make informed choices about your lifestyle and overall wellbeing. Through this, you can communicate effectively with your healthcare team and advocate for your needs.
A strong healthcare team is key
Aging your haemophilia care involves many aspects, and a team of healthcare professionals can guide you.1,2
Good communication between you and your healthcare team ensures that you understand your treatment plan, can ask questions, and have the support you require to optimise your care.3
Key specialists in haemophilia management include:
Haematologist
A specialist doctor in blood disorders, making them the primary healthcare provider for haemophilia treatment. They can assess your condition, monitor your clotting factor levels, and adjust your treatment as necessary.2 They also provide guidance on preventing and managing bleeding episodes.
Nurses and care coordinators
Assist in helping you with your haemophilia treatment schedule and addressing any concerns or complications you may have.4 They can also provide education on clotting factor administration and ensure you follow your care plan correctly.2,4
Physical therapist
Help you with exercises designed to strengthen the muscles around your joints and improve flexibility.2,4 These exercises aim to help prevent joint damage and improve your mobility.2,4
Orthopaedic specialist
A doctor who focuses on bones, joints, and muscles. They are crucial in preventing and managing joint damage caused by repeated bleeding into the joints,5 will monitor your joint health and provide recommendations on how to protect and strengthen your joints.5
Mental health specialist
Living with a chronic condition like haemophilia can affect your mental and emotional wellbeing. A specialist can help you cope with the psychological challenges of living with haemophilia, including managing stress or feelings of isolation.2 They can also support your loved ones, helping everyone adapt to the condition.2
Managing your treatment and medications
The goal of haemophilia treatment is to restore normal or near-normal clotting factor levels in your blood.2 This significantly reduces the risk of bleeding, preserves joint function, and improves your overall quality of life.2 Effective treatment is essential to prevent both visible and "silent" microbleeds, which can lead to joint damage over time.2
Treatment for haemophilia generally falls into two categories:
Prophylactic or preventative treatment
Involves receiving regular clotting factor replacement therapy on a schedule, even if you are not experiencing any symptoms.3 This helps keep your clotting factors at healthy levels and reduces the risk of bleeding episodes.3
On-demand or reactive treatment
Clotting factors are administered by you or your healthcare team as soon as a bleed occurs and is noticed. The aim is to stop the bleed before it causes long-term damage.3
It's important to follow your treatment schedule and work closely with your healthcare team to develop a treatment plan that fits your lifestyle, and adjusted as you age.5,6
Recognising and monitoring for bleeds
One of the most important aspects of haemophilia care is recognising and responding to bleeding episodes.3 By catching them early, you can take steps to prevent further complications, like joint damage.3
Signs of a bleed
Look out for signs of bleeding, such as:3
- Joint pain, swelling, or stiffness
- Unexplained bruising or prolonged bleeding from minor cuts
- Changes in your skin colour or the appearance of blood in your urine or stool
Responding to a haemophilia bleed
If a haemophilia-related bleed occurs, prompt treatment is critical.6,7 Follow your treatment plan by administering clotting factors as prescribed. Seek medical help if the bleed does not stop or if it affects a major joint or organ.6,7 Regular imaging, such as ultrasound or MRIs, can help detect microbleeds that may not show obvious symptoms.2
Protecting and strengthening your joints
Joints are particularly vulnerable in people with haemophilia.8 Repeated bleeds into the joints can lead to permanent damage and disability.8 You can help protect and strengthen your joints through regular exercise and physical therapy.8,9
Living with haemophilia can take a toll on both your physical and mental health. Taking steps to care for both is essential for maintaining a good quality of life.
Stay active and eat well
Staying active helps maintain joint and muscle health, while eating a balanced, nutritious diet supports your overall wellbeing. A healthy diet can also help you maintain a healthy weight, which reduces the stress on your joints.3
Manage stress and seek support
Managing stress, seeking support from friends, family, or mental health professionals, and taking time for self-care can help you stay balanced and focused on your health.6,10
Planning for the future with haemophilia
Managing haemophilia is a lifelong journey. It’s important to be prepared for emergencies and know what to do if urgent medical care is needed. Have a plan in place for situations like accidents or sudden bleeds and ensure that your caregivers or family members are also aware of how to help in these circumstances.11,12 It is also important to see your healthcare team regularly as they will help with the continuing management of your haemophilia.7
As you age, your treatment needs may change.2,8 Work with your healthcare providers to make a long-term plan that considers changes in your lifestyle, goals, and advances in treatment options.2,8 Emerging therapies may offer opportunities to manage your condition more effectively, so stay informed and proactive about your care.
With the right support and tools, you can optimise your care and ensure that haemophilia doesn’t define your life.
- CDC. Hemophilia – Living with hemophilia. Available at: https://www.cdc.gov/hemophilia/living-with/index.html. Accessed February 2025.
- Srivastava A, Santagostino E, Dougall A, Kitchen S, Sutherland M, Pipe SW et al. Haemophilia 2020;26(6):1–158.
- The Haemophilia Society. Understanding haemophilia booklet. Available at: https://haemophilia.org.uk/wp-content/uploads/2023/07/THS_A5_understanding_JCv1_interactive.pdf /. Accessed March 2025.
- The Haemophilia Society. Who will be involved in care of those living with haemophilia? Available from: https://haemophilia.org.uk/bleeding-disorders/faqs/who-will-be-involved-in-care-of-those-living-with-haemophilia/. Accessed March 2025.
- Rodriguez-Merchan EC. EFFORT Open Rev 2019;4(5):165–173.
- National Bleeding Disorders Foundation. T.H.R.I.V.E. 6 steps to living healthy with a blood disorder. Available at: https://www.bleeding.org/educational-programs/outreach/thrive. Accessed March 2025.
- World Federation of Hemophilia – important points for people living with hemophilia. Available at: https://elearning.wfh.org/elearningcentres/hemophilia/?_gl=1*1b4r0t0*_ga_7974KH9LH5*MTczODk1MzQ3OC4xLjEuMTczODk1MzQ4Mi4wLjAuMA. Accessed March 2025.
- The Haemophilia Society. Ageing with a bleeding disorder: Managing trips, falls and mobility. Available at: https://haemophilia.org.uk/wp-content/uploads/2024/11/Managing-trips-falls-mobility_-FINAL-for-printing.pdf. Accessed March 2025.
- The Haemophilia Society. Healthy living. Available at: https://haemophilia.org.uk/support/day-day-living/healthy-living/. Accessed March 2025.
- The Haemophilia Society. Positive mental health. Available at: https://haemophilia.org.uk/support/day-day-living/positive-mental-health/. Accessed March 2025.
- National Bleeding Disorders Foundation. Steps for living. Emergency preparedness. Available at: https://stepsforliving.bleeding.org/everyday-life/travel-and-emergency-preparedness/emergency-preparedness/9-15. Accessed March 2025.
- National Bleeding Disorders Foundation. Steps for living. Emergency preparedness. Available at: https://stepsforliving.bleeding.org/everyday-life/travel-and-emergency-preparedness/emergency-preparedness/16-25. Accessed March 2025.
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