What happens when you have haemophilia?
Haemophilia is a lifelong condition but there are effective treatments to manage and prevent its symptoms.
Treatment for haemophilia is provided through a specialist team at a Haemophilia Treatment Centre and is specific to the individual.
Some people with haemophilia have treatment to prevent bleeding episodes or ‘bleeds’. This treatment is called ‘prophylaxis‘.
In Australia a child born with haemophilia today has a similar life expectancy to other Australians.
If a person has haemophilia, they have lower than normal levels of clotting factor. There are other things that can affect an individual’s bleeding patterns, including their particular genetic alteration. This is called the bleeding phenotype.
When will a person with haemophilia have bleeding problems?
The common belief that people with haemophilia could bleed to death from a cut is a myth.
A person with haemophilia does not bleed any faster than anyone else, but bleeding can continue for longer if it is not treated and can result in poor healing. This occurs when blood does not form a tough, adherent clot where the blood vessels have been damaged.
Small injuries and medical procedures
- Minor cuts and scratches on the skin are not usually a problem. They can be treated with normal first aid, such as putting on a Band-Aid® and some pressure at the site of bleeding.
- However, haemophilia can sometimes complicate small injuries and medical procedures. If first aid does not stop the bleeding, bleeding can continue for days.
- If the bleeding does not stop, specialised treatment will be needed so blood can clot normally.
Bleeding episodes or ‘bleeds’
Bleeding episodes or ‘bleeds’ can occur internally in any part of the body. Bleeds can occur in anyone with haemophilia but occur more often in a person with severe haemophilia who is not having preventive treatment.
Any bleeding episode in a person with haemophilia can be serious no matter whether they have the mild, moderate or severe form and needs medical assessment and treatment.
Without treatment, people with haemophilia can have prolonged bleeding after medical or dental procedures or surgery or with deep cuts or wounds.
Another problem for people with haemophilia is internal bleeding into joints (especially knees, ankles or elbows), muscles or organs.
- This can happen as a result of injury.
- In some cases it can occur without an obvious cause (sometimes called ‘spontaneous’) – this is more common in severe haemophilia.
- If internal bleeding is not stopped quickly with treatment, it will result in pain and swelling.
- Some internal bleeding may be caused by other health problems, eg blood in urine.
- Over a period of time, repeated bleeding into joints and muscles can cause permanent damage, such as arthritis and chronic pain.
Bleeds into the head, spine, neck, throat, chest, stomach or abdominal area are much less common but can be life-threatening. If this happens, the person with haemophilia should go to an emergency department immediately and their Haemophilia Treatment Centre should also be contacted.
Both males and females can have haemophilia, but nearly all people with severe haemophilia are male.
Special issues for females
Females with haemophilia usually have the mild rather than the severe form. However, females can experience additional bleeding problems:
- Heavy and/or long menstrual periods.
- This can lead to low iron levels or anaemia (low red blood cells or low haemoglobin) and they can feel tired, faint and short of breath.
- Some women also have heavy bleeding for an extended time after childbirth.
Liaison between a specialist Haemophilia Treatment Centre and a gynaecologist or obstetrics team will be important to manage or prevent excessive bleeding in females.