What is haemophilia?
Haemophilia is a rare disorder where a person's blood does not clot properly because the body does not produce enough blood clotting proteins. People with haemophilia bleed for longer when they get a cut or if they bleed internally.


What are the types of haemophilia?
Haemophilia A, also called Classical Haemophilia, occurs when clotting Factor VIII is either absent or not present in sufficient amounts.

Haemophilia B, also called Christmas Disease, occurs when clotting Factor IX is either absent or not present in sufficient amounts.

Haemophilia C is extremely rare and occurs when clotting Factor XI is either absent or not present in sufficient amounts.
Cases can be mild, moderate or severe, depending on the individual.


Who has haemophilia?
Haemophilia mostly affects males. The incidence of haemophilia A is one in 5,000 - 10,000. Haemophilia A is twice as common as haemophilia B.

Haemophilia C is rare, affecting about one in every 100,000 people and is usually found in people of Jewish or Eastern European descent. Unlike A and B, the rates of this condition are equal among men and women.


What are the levels of severity of haemophilia A?
The severity of haemophilia comes down to the amount of clotting factor that is either missing or deficient.
Mild haemophilia A = patients with Factor VIII levels of 6% to 50% of normal
Moderate haemophilia A = patients with Factor VIII levels of 1% to 5% of normal
Severe haemophilia A = patients with Factor VIII levels of <1% of normal

How does blood clot?
Bleeding causes a biological "domino effect" in which a series of events are set in motion. Blood vessels begin to shrink to reduce blood flow. Then platelets (blood-clotting cells) begin to collect at the injured site to form a temporary plug.
Clotting factor proteins are sequentially activated to form a fibrin clot and stop the bleed. For people with haemophilia, the missing proteins prevent the domino effect from completing. As a result, your clotting process takes longer to start.


What is clotting factor?
Clotting factors are proteins found in blood that work together to make blood clot. They are designated by Roman numerals VIII through XIII.

When the body detects bleeding it switches on the clotting factors in a sequential order. These each activate the next factor in the blood-clotting cascade to ultimately form a fibrin clot. The fibrin acts like a kind of net that holds the platelets together to make a firm blood clot.


Can haemophilia be cured?
At the present time there is no cure for haemophilia, but with proper treatment using clotting factors, even people with rare and severe haemophilia, can enjoy a full and active life.


What are the treatment options for people with haemophilia?
Factor replacement therapy works by replacing the missing or non-functioning clotting protein.
When clotting factor is administered after an injury, the body uses to form a clot. This isn’t a cure but a temporary replacement therapy to treat the symptoms of haemophilia.

There are a range of therapies for people with haemophilia A. Talk to your doctor or healthcare provider about the best treatment for your specific needs.

What are inhibitors?
Inhibitors are antibodies made by the immune system. When your immune system identifies a foreign substance, antibodies are produced to destroy it, and defend you against harmful diseases.

In some people with haemophilia A, Factor VIII replacement therapy is identified as a foreign substance by their immune system. This can seriously complicate the treatment of a bleed.

Fortunately, there are different types of therapies available to successfully manage haemophilia in patients who develop inhibitors.


Where can I get more information about haemophilia?
This site contains a wealth of information and resources related to all aspects of living with or caring for someone with haemophilia.

The Haemophilia Foundation of Australia or your local Haemophilia Treatment Centre can also provide information that is specific to you and your condition, so contact them if you have any questions or concerns.


What does it mean to have Haemophilia?
Having haemophilia means that your blood cannot clot properly. Contrary to popular belief, this doesn't mean that you are liable to bleed to death from a minor cut, neither would you bleed faster than other people if you get injured. You can, however, bleed for longer. Although bleeding can be from cuts or grazes on the skin most bleeding that occurs is internal, into muscles and joints.


How does it impact on everyday life?
For a child, if properly managed, haemophilia does not need to have a big effect on everyday life. However, caring for a child with a long-term condition can require some general family adjustments and your specialist care team will be able to advise you on things to look out for. For adults haemophilia can still have a big impact on everyday life, however appropriate management can help to reduce this effect.


Does it go away or will it get worse or better?
There is no cure for haemophilia, however, with care and regular treatment, someone with haemophilia can live a healthy, normal life.


What if I have a bad bleed, is it dangerous?
Internal bleeding can be serious and treatment with clotting factor is necessary when it occurs in the joints, muscles or internal organs. Don't forget, delaying treatment can cause long-term damage to the joints.


Will it have an effect on how long I live?
Although in the past haemophilia affected life expectancy, today due to improved treatments and knowledge about haemophilia, patients should expect to have a normal lifespan.