Understanding the impact of bleeds in haemophilia

Haemophilia is a condition where the blood doesn't clot properly, making people with haemophilia more susceptible to bleeding episodes.¹ While some bleeds in haemophilia are visible and easily identifiable, others, called silent bleeds, may not be noticeable right away but can still cause significant damage over time.² Understanding these bleeds, particularly silent bleeds in haemophilia, is key to preventing long-term complications and protecting overall health and quality of life.²

Clinical bleeds 

Clinical bleeds can be seen and/or felt when they occur. These include bleeds resulting from cuts, scratches, or bruises.¹ Clinical bleeds also include internal bleeds, such as bleeding in the joints, which can be associated with symptoms such as swelling, pain, and stiffness.^1,4 

Early signs of clinical bleeds related to haemophilia can include a bubbling or tingling feeling in the joint, warmth and an ‘aura’.^1,4 Later, affected joints may feel warm to the touch and be stiff, painful, and/or swollen.^1,4 

As the symptoms of such bleeds are noticeable, these bleeds can be easier to manage. Immediate treatment with clotting factor replacement therapy can help stop the bleeding, may help prevent further damage or complications, and reduce the impact on everyday life.^1,3 

Silent bleeds 

In contrast to clinical bleeds, silent bleeds or subclinical bleeds can occur inside the body without any symptoms.⁵ Silent bleeds are small internal bleeds that can happen in various parts of the body, including in joints, muscles, and the brain.^5,6 As silent bleeds are often painless or subtle, they may not be recognised or felt and may be overlooked.⁵ However, silent bleeds can lead to longer-term complications such as joint abnormalities.⁵ 

Silent bleeds typically occur in areas where there is a lot of movement, pressure, or activity. 

Joints 

Joints are one of the most common sites for silent bleeds in haemophilia, especially in the knees, elbows, and ankles.⁷ 

Repeated joint bleeds can lead to chronic joint damage and haemophilic arthropathy.⁵ 

Muscles 

Silent bleeds can also occur in muscles, such as in the muscle at the front of the groin area (called the iliopsoas muscle), the forearm, and the calf muscle.⁸ 

Over time, muscle bleeds can cause pain, weakness and loss of mobility. 

While silent bleeds might not cause immediate symptoms, their effects can be long-lasting and cumulative, leading to serious health problems if not addressed and prevented. 

Joint damage 

Chronic joint damage is one of the most significant risks of repeated silent bleeds in the joints. Damage in the joints can start in the early childhood years.⁹ Each time a joint bleeds internally, it causes inflammation and irritation of the surrounding tissues, known as synovitis.¹⁰ Progressive damage and inflammation to the joint tissue can lead to haemophilic arthropathy.⁴ 

Over time, progressive deterioration of the joint combined with ageing can lead to chronic pain that makes it hard to move the affected joint.^4,11 Stiffness reduces the range of motion, and there is loss of mobility as the joint becomes more damaged and deformed.^4,11 Eventually, without proper haemophilia management, this can result in permanent damage to the joint, making it difficult to perform everyday activities.^4,11 

Bone damage 

Silent bleeds in joints can also lead to damage to the bones beneath the cartilage, a condition known as subchondral bone damage.^5,12,13 Over time, this damage can result in bone loss or erosion around the joint, making the bone more fragile.^5,12,13 There is an increased risk of fractures or bone deformities and long-term disability as damaged bones and joints lose their ability to function properly. ^11–13 

Muscle damage 

Repeated muscle silent bleeds can lead to swelling or tenderness that might not be immediately apparent.¹⁴ These bleeds can cause muscle pain or weakness, which can interfere with movement and physical activity.¹⁴ If untreated, muscle bleeds can contribute to long-term disability.¹⁴ 

Cumulative effects ^4,9,10,15 

Silent bleeds, though often unnoticed in the short term, can accumulate over time.² Repeated silent bleeds in various parts of the body can cause a gradual decline in mobility through a gradual build-up of pain and damage to joints, muscles, and bones.^4,11 This can affect all aspects of everyday life, including physical and mental health.³

Early detection and proactive management 

Early detection of silent bleeds is important for preventing long-term damage.^3,16 Healthcare providers can focus on silent bleeds through regular check-ups, imaging tests, and assessments of joint function.^3,16 By catching changes from silent bleeds early, it is possible to take steps to prevent further damage and protect joint, bone, and muscle health.³ 

One of the most effective ways to manage the incidence of bleeds and prevent serious complications is through maintaining increased factor levels through prophylaxis therapy.³ Regular treatment with clotting factor replacement therapy may help reduce the frequency and severity of bleeding episodes.³ This proactive haemophilia treatment can minimise the damage caused by both clinical bleeds and silent bleeds and reduce the long-term impact on the body.³ 

Working  with healthcare providers for haemophilia management 

People with haemophilia and their families may benefit from a collaborative approach with their care team when it comes to developing a treatment plan. This plan may include regular monitoring for signs of silent bleeds, even if no obvious symptoms are present; receiving treatment and physical therapy to maintain joint mobility and muscle strength. Your doctor may also use imaging tools, such as ultrasound and magnetic resonance imaging (MRI) to detect joint abnormalities that are not visible externally.^17,18 

Staying proactive and working together with a healthcare team may significantly improve the quality of life for people with haemophilia. With the right treatment care plan and ongoing monitoring, the risks and impact associated with silent bleeds may be minimised. 

Click here to download the ‘Silent bleeds’ infographic for more information. 

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NP-40108 created January 2025