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Changing Haemophilia: Signs, risks and treatment of internal bleeding

People living with haemophilia are prone to slow, steady and continuous bleeding after minor trauma – or after no trauma at all, in the case of severe haemophilia. The amount of clotting factor in the blood directly determines the seriousness of the condition. Almost all people with haemophilia are men, and just over one third of them have severe haemophilia. The rest have the mild or moderate type.

This is general disease awareness and should not be understood as medical  advice. If you experience symptoms of COVID-19 or have questions, doubts or concerns, you should contact your doctor. Always follow the advice of local authorities.

While people with haemophilia can experience bleeding both externally and internally, this blog post focuses on internal bleeds as these are the biggest concern for people with haemophilia.

The seriousness of bleeds can vary significantly – from superficial bruising, which is treatable at home, to bleeds requiring visits to the hospital or haemophilia treatment centre such as head, throat or stomach bleeds. In some cases, a bleed may take several weeks to resolve.

When it comes to joint bleeds, the elbow and knee joints are particularly susceptible , but bleeds can occur in multiple parts of the body. Here are a handful of other areas commonly affected:

  • the area just under the skin (superficial bruising)
  • the area some distance beneath the skin (deeper bruising, which may
  • result in lumps or haematomas)
  • the area deep in the muscles
  • the nasal mucosa (the inside of the nose)

When it comes to frequency, people with severe haemophilia may have 2-3 bleeds per month, while those who are moderately affected may have 5-6 bleeds per year. However, even in those living with severe haemophilia, the bleed frequency may vary a lot and is likely to depend on such things as activity. People with mild haemophilia experience bleeds even less frequently, with one study citing just one (joint) bleed per year in a patient with mild haemophilia A.

Because of the potential after-effects of a bleed, people with haemophilia cannot just wait them out. If joint bleeds are repeatedly left untreated, the long-term effects can be arthritis or destruction of the joint. All bleeds should be given immediate attention and sometimes immediate intervention.

How can a bleed be detected?

Before you can respond to a bleed, you obviously need to know what one looks and feels like. So what are the early signs of a bleed? When there are no visual symptoms, a warm, tingling or prickly sensation in the affected area can be evidence of bleeding. Other signs are soreness, pain or a feeling of pressure.

In the specific case of joint bleeds, the experience is a little different.

Early signs of such an episode include:

  • a “funny”, tingling or bubbling sensation in the joint
  • pain, most commonly in a leg or arm
  • reluctance to use a joint fully
  • warmth in the affected area
Later, a joint bleed sometimes results in:
  • stiffness and/or swelling in the joint
  • the joint being warm to the touch

To minimise the restrictions such symptoms may impose, people commonly alter and compensate for the familiar or natural use of their limbs. In the case of a joint bleed in the right elbow, for example, a right-handed person may choose to use the left arm instead. Becoming aware of such compensatory use, haemophilia patients as well as carers should be alert.

What should be the response to bleeds

As stated above, some bleeds don’t require any medical attention. But in case of uncertainty about either 1) what is going on internally and/or 2) the necessity of medical attention, it’s best to check with the haemophilia treatment centre. A healthcare professional may choose to administer factor product, which is known as factor replacement therapy. While superficial bruises don’t need any medical treatment, treatment is occasionally needed in the case of deeper bruises or bruises in tight areas (such as the forearm – to avoid nerve compression).

In the event of a slow bleed, the word “PRICE” is a useful summing-up of the kind of First Aid treatment that people with haemophilia should self-apply (or be treated to from carers):

  • P stands for Protection
  • R stands for Rest
  • I stands for Ice
  • C stands for Compression
  • E stands for Elevation

In other words, to reduce swelling and prevent further bleeding, implement immediate Protection and Rest while applying Ice and a Compressive bandage to the affected and preferably Elevated area. By Protection we mean reducing stress or weight bearing on the affected joint or muscle, for instance by using crutches or other supports.

The PRICE routine should be continued throughout the healing process, which can take several days or even weeks.

In general, clotting factor treatment may be needed for joint and muscle bleeds. Again, people living with haemophilia ought to get in touch with their haemophilia treatment centre if they need medical attention or wish to understand their general condition better.

Living with haemophilia

Living with haemophilia does not mean having to give up on having a fulfilling and active life, but it does mean having an understanding of one’s condition, individual limitations and medical needs. Caring properly for bleeds is one of the essential parts of maintaining a healthy life with haemophilia.

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