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Haemophilia - General Questions

What is haemophilia?

Haemophilia is incurable and without proper treatment, can be life threatening. It is a blood clotting disorder where there is not enough clotting factor VIII (8) or IX (9) in the blood. A clotting factor is a protein in the blood that helps control bleeding.

Haemophilia is an inherited condition and occurs in families. However in 1/3 of cases it appears in families with no previous history of the disorder. The genetic alteration causing haemophilia is passed down from parent to child through generations. Men with haemophilia will pass the gene on to their daughters but not their sons. Women who carry the altered gene can pass the gene on to their sons and daughters. Sons with the gene will have haemophilia. Most women and girls who carry the gene do not have bleeding symptoms. Others may have a bleeding tendency. If they have have low factor levels, girls and women will have haemophilia.

How many people have haemophilia in Australia?

Currently in Australia there are more than 2,800 people diagnosed with haemophilia of varying degrees of severity. More than half have mild haemophilia and around 30% have severe haemophilia.

Who gets haemophilia?

Haemophilia is found in all races and all socio-economic groups.

Are there different types of haemophilia?

Yes. Each 'type' refers to the lack of a specific clotting factor. Factors VIII (8) and IX (9) are the most common deficiencies, however others do exist. Factor VIII deficiency is known as haemophilia A while haemophilia B refers to deficiency of factor IX. Haemophilia can be mild, moderate or severe, depending on the degree of the deficiency (ie how much factor is missing).

Mild Haemophilia - 5-40% factor VIII or IX activity
Moderate Haemophilia - 1-5% factor VIII or IX activity
Severe Haemophilia - Less than 1% factor VIII or IX activity

Don't people with haemophilia bleed to death if they get scratched?

It is a common myth that people with bleeding disorders will bleed to death if they are cut or scratched. People with haemophilia may find their cuts bleed a little longer than others - but under most conditions they will not bleed to death! Actually, internal bleeding is the biggest concern for people with haemophilia.

What's that about internal bleeding?

People with haemophilia can bleed internally (ie have 'bleeds'). This can happen as a result of injury or surgery, or may happen for no apparent reason.

Can you tell me about bleeds?

Most bleeds are internal, into joints, such as knees and elbows, or muscles. If internal bleeding is not stopped quickly with treatment, it will result in pain and swelling. 

The person with the bleeding disorder will often be able to tell they are having a bleed before signs are visible. They get to know the way a bleed 'feels'. There are many signs of a bleed. These include but are not limited to: warmth, swelling from the affected area and bruising.

Over a period of time, repeated bleeding into joints and muscles can cause permanent damage, such as arthritis in the joints, 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 attend an emergency centre immediately and their Haemophilia Treatment Centre should also be contacted. 

Is haemophilia a Royal Disease?

Haemophilia is caused by an alteration in the factor VIII (8) or IX (9) gene and can occur in any family. 

Haemophilia has often been associated with European royal families and is sometimes called ‘The Royal Disease’. This is because several members of the European royal families had haemophilia or carried the gene in the nineteenth and twentieth centuries. Queen Victoria of England (1819-1901) carried the altered factor IX gene causing haemophilia B. One of her sons had haemophilia and the gene was passed on through some of her children to the English, Prussian, Russian, and Spanish royal families. No living member of the current royal families of Europe is known to have haemophilia or carry the gene for it.

Can people with haemophilia play sport?

Yes. Exercise is good for everyone. People with haemophilia will find that sport strengthens joints and muscles, helping prevent bleeds. Care needs to be taken when choosing a sport as rough high contact sports such as football and boxing aren’t usually recommended as they may cause bleeds. People learn to manage their condition and know what is good for them to do and are recommended to speak to their doctor.

Should a child with haemophilia wear protective gear, helmets etc?

Current treatments mean that protective gear for every-day living is not necessary. Like all people, protective gear/helmets should be worn for activities such as riding motorbikes and bicycles, skateboarding and football.

Do people with haemophilia die young?

No, not any more. Treatments currently available in Australia allow people with haemophilia to live a normal lifespan.

Can people with haemophilia travel?

Yes. They just have a little more organising and packing to do. They need to contact their Haemophilia Treatment Centre to organise enough treatment product and equipment for the time they are away. They also need to find out where the nearest Haemophilia Treatment Centres are to where they will be staying. They may also need documentation to carry medication and treatment equipment through security and customs - it is important to talk to their Haemophilia Treatment Centre about this well in advance and allow plenty of time to prepare the documentation.