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Doorbreken van de pijncyclus

Om gewrichtsschade te voorkomen of te stoppen is het belangrijk om vroeg in te grijpen, zodat bloedingen in de gewrichten worden gestopt en de vicieuze cirkel van pijn wordt doorbroken.

Progressieve gewrichtsschade en begeleidende pijn kunnen alle aspecten van het leven beïnvloeden, relaties beïnvloeden, fysieke activiteit beperken en slaap, werk en geestelijke gezondheid beïnvloeden. De onderstaande infographic helpt je om gewrichtsschade te voorkomen.

Download hier de infographic over het doorbreken van de pijncyclus
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What this infographic covers

The infographic explores how clotting factor levels relate to protection from bleeding and the cycle of bleeding, synovitis, joint damage and pain in people living with haemophilia.

Lower factor levels can increase the risk of bleeding and subsequent joint damage, while factor levels within the normalised haemostasis range may offer protection closer to that of a person without haemophilia. The infographic also illustrates how a bleeding event can initiate a cycle of inflammation, progressive joint damage and pain, potentially affecting physical activity, sleep, work, relationships and mental health.

It highlights the importance of early intervention to help prevent joint bleeds and stop the progression of joint damage.

Key takeaways

  • Factor levels influence protection from bleeding. Lower factor levels are associated with a greater risk of bleeding, joint damage and pain. Normalised haemostasis is defined in the infographic as factor levels above 40%.
  • Bleeding can initiate a cycle of joint damage and pain. A bleeding event can lead to synovitis, progressive joint damage and chronic pain. Damaged and inflamed joints may then become more prone to further bleeding.
  • Early intervention is important. Understanding factor levels, preventing bleeding episodes and addressing joint damage early may help break the cycle. Physiotherapy should be considered early, while severe joint damage may require more invasive procedures.
Infographic showing the haemophilia pain cycle: joint bleeding can cause acute pain and lead to synovitis (inflammation), restricted movement and chronic pain. Repeated bleeding and inflammation can cause lasting joint damage.

A section of the infographic showing the haemophilia pain cycle.

Breaking out of the haemophilia pain cycle: The role of factor levels

In people living with haemophilia, low factor levels lead to bleeds [1-3]

People living with haemophilia are missing a component in the blood called “clotting factor” that is essential for blood clotting and managing bleeding.[1,2]

The amount of clotting factor in the blood, known as factor levels, can determine a person’s level of protection against bleeding and the severity of symptoms they might experience.[1,3]

Normalised haemostasis, above 40%:
Protection similar to that of a person without haemophilia.

Mild haemophilia, 5–40%:
A person can still experience bleeds and subsequent joint damage.

Moderate haemophilia, 1–5%, and severe haemophilia, below 1%:
High risk of spontaneous bleeds, joint damage and pain due to lack of protection.

A chart presents clotting factor levels as a percentage of normal, ranging from below 1% to 150%. The level of protection increases as factor levels rise.[3]

Bleeding events can trigger a cascade of painful experiences

Bleeding event

A single bleed can trigger a cycle of events leading to pain.[4]

A bleeding event may go unnoticed, but acute pain in the joint can act as a warning sign indicating the presence of a bleed.[1,4]

A bleeding event can be accompanied by short-term acute pain, including throbbing, sharp pain or tenderness.[4,6]

Synovitis – inflammation

Repeated bleeding events can lead to inflammation, known as synovitis, in the joints.[4,5]

Synovitis can restrict movement of the affected joints and lead to chronic pain.[4,6]

It may be associated with deterioration of the muscles. Joints may be swollen without being severely painful.[4,6]

Joint damage

Over time, repeated bleeds and synovitis can damage joint health and structure. This is known as haemophilic arthritis and can lead to longer-term chronic pain.[4,5]

Joint damage may feel like aching or stiffness. Pain can worsen with movement and weight bearing on the joints.[4]

Damaged and inflamed joints are more prone to bleeds, and the cycle can begin again.[6]

Progressive joint damage and accompanying pain can affect many aspects of life, including relationships, physical activity, sleep, work and mental health.[7–10]

Factor levels play a role in breaking out of the cycle of pain

Bleeding events

When factor levels are within the normalised haemostasis range, the number of bleeding episodes a person experiences may be reduced, and bleeds can potentially be resolved when they occur.[16]

Factor levels above 30–35% may help prevent spontaneous joint bleeds.[12,15]

Synovitis

Synovitis can be prevented and limited when clotting factor levels are within the normalised haemostasis range, helping to prevent bleeding episodes.[6,11]

Joint damage

Addressing joint damage can reduce further bleeding.[6]

Physiotherapy should be considered early and can help prevent injury or muscle deterioration and relieve pain resulting from joint damage.[4,13]

Severe joint damage may require more invasive procedures, such as surgery.[13]

Breaking the cycle

To prevent or stop the progression of joint damage, it is important to intervene early to stop joint bleeds and break out of the cycle of pain.[5,6,13]

Factor levels within the normalised haemostasis range could support an everyday life with greater freedom from haemophilia-imposed limitations. This could potentially provide greater peace of mind when pursuing social and professional activities without the impact of acute and chronic pain.[14]

Medical information notice

This information is not a substitute for professional medical advice. Always consult a qualified healthcare professional if you have questions about your medical condition, diagnosis or treatment.

Medically reviewed by Sobi Medical Affairs

Published: September 2026
Last medically reviewed: September 2026

  1. Blanchette VS, et al. J Thromb Haemost. 2014;12:1935–9.
  2. National Bleeding Disorders Foundation. Available at: https://www.bleeding.org/bleeding-disorders-a-z/overview/what-is-a-bleeding-disorder (accessed October 2024).
  3. National Bleeding Disorders Foundation. Available at: https://www.bleeding.org/bleeding-disorders-a-z/types/hemophilia-a (accessed October 2024).
  4. Auerswald G, et al. Blood Coagul Fibrinolysis. 2016;7:845–54.
  5. Riley RR, et al. Haemophilia. 2011;17:839–45.
  6. National Hemophilia Foundation. Nursing Working Group – nurses’ guide to bleeding disorders. Common bleeding episodes. Available at: https://www.hemophilia.org/sites/default/files/document/files/nurses-guide-chapter-4-common-bleeding-episodes.pdf (accessed October 2024).
  7. Forsyth AL, et al. Patient Prefer Adherence. 2015;9:1549–60.
  8. von Mackensen S, et al. Haemophilia. 2016;22:521–30.
  9. O’Hara S, et al. Haemophilia. 2020;27:113–9.
  10. Chantrain V, et al. Haemophilia. 2023;29:521–9.
  11. Steps for living (Hemophilia). Pain management. Available at: https://www.stepsforliving.hemophilia.org/step-out/non-factor-treatment/pain-management (accessed October 2024).
  12. Soucie JM, et al. Blood Adv. 2018;2:2136–44.
  13. Knobe K, Berntorp E. J Comorb. 2011;27;1:51–9.
  14. Holme PA, et al. Haemophilia. 2024. Online ahead of print.
  15. Chowdary P, et al. Thromb Haemost. 2020;120:728–36.
  16. Jones C, et al. Orphanet J Rare Dis. 2025;20:272.