How often do people need treatment?
Most people with haemophilia will need treatment for injuries apart from minor cuts and scratches or in preparation for surgical and some dental procedures.
Moderate and severe haemophilia
Current treatment for people with moderate or severe haemophilia aims to prevent bleeding, pain and joint damage.
In Australia the usual treatment for most children and young people with severe haemophilia is prophylaxis, where a non-factor therapy or factor concentrate is injected regularly to help protect from ‘non-traumatic’ bleeds, ie the bleeds that are not caused by an obvious injury or a medical procedure like surgery.
Many children and young people have benefited from prophylaxis, which reduces the risk of developing the arthritis and joint problems often experienced by older people who grew up without adequate treatment due to limited supply of product.
In most cases, people with mild haemophilia will not need regular prophylaxis and will only need treatment for a bleed when it occurs, usually after trauma or injury, or when they are preparing for surgery or some dental work. Some women and girls with mild haemophilia may need a treatment plan to manage heavy menstrual bleeding.
Treatment also involves exercise and rehabilitation guided by a haemophilia physiotherapist. This helps to prevent and recover from bleeds, to improve the health of joints in the long-term and to help maintain a healthy body and mind.
Even when having preventive treatment regularly, bleeding into joints and muscles may still occur.
All bleeding episodes should be treated promptly. Any bleed should be reported to the haemophilia care team.
To recover fully from a bleed, people with haemophilia are advised to apply the PRICER principles when they have a bleed and to work with their Haemophilia Treatment Centre team, including their haemophilia physiotherapist, to rehabilitate the joint or muscle back to full function.
PRICER stands for:
P Protection – protect the injury from further damage. Stop the activity, minimise weight on the affected joint or muscle.
R Rest – rest the affected joint or muscle.
I Ice – to reduce pain and swelling apply a cold pack (eg, an ice pack or bag of frozen vegetables wrapped in a towel) or a cool relief gel directly on the skin for about 10-15 minutes, then remove and reapply about every two hours.
C Compression – apply pressure to the affected area to slow bleeding. If using a bandage, do not wrap it too tightly.
E Elevation – place the affected joint or muscle higher than chest level.
The Haemophilia Treatment Centre team helps people with haemophilia and parents to learn how to recognise a bleed and deal with it promptly, and how to prevent and rehabilitate injuries and bleeds.
ABDR and MyABDR
If people are diagnosed with haemophilia or as a ‘haemophilia carrier’, they may be asked by the Haemophilia Treatment Centre to register in the Australian Bleeding Disorders Registry (ABDR). This is the online system used by Treatment Centres across Australia to manage and record the treatment and care of their patients.
The Haemophilia Treatment Centre will also organise an ABDR patient card. This is a wallet card that explains the person’s:
- Diagnosis and severity
- Treatment plan
- Who to contact for further medical advice.
When people are using haemophilia treatment products at home, they can use the MyABDR app and website to record their treatments and bleeding episodes and share the information with their HTC.