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Fast Facts

More than 7,400 people in Australia have been diagnosed with a bleeding disorder.

Haemophilia

  • Haemophilia occurs in 1 in 6,000-10,000 males internationally.
    • Approximately 1 in 6,000 males has haemophilia A
    • Approximately 1 in 25,000-30,000 males has haemophilia B
  • Currently in Australia there are more than 3,200 people diagnosed with varied degrees of severity.
  • There are 2 types of haemophilia:
    • Haemophilia A (classical haemophilia) is the most common type and caused when there is not enough clotting factor VIII (8) in the blood.
    • Haemophilia B (Christmas Disease) occurs when there is not enough clotting factor IX (9) in the blood
  • Bleeding (‘bleeds’) can occur internally in any part of the body, including joints, muscles and organs, particularly after an injury or surgery. It can also happen without an obvious cause (sometimes called ‘spontaneous’).
  • Over time repeated bleeding into joints and muscles can cause arthritis, chronic pain and disability.
  • Specialised treatment is needed to help blood clot normally. With appropriate treatment haemophilia can be managed effectively.
  • Haemophilia is a hereditary genetic 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 alteration on to their daughters but not their sons. Women who carry the gene alteration can pass it on to their sons and daughters. Sons with the gene alteration will have haemophilia.
  • Most women and girls who carry the gene alteration do not have bleeding symptoms. However, approximately 20-30% have reduced factor levels and bleeding problems. If their factor levels are low enough, women and girls will have haemophilia, usually the mild form.

What is it like to have haemophilia?
READ PERSONAL STORIES from PEOPLE WITH HAEMOPHILIA
HEAR YOUNG PEOPLE’S STORIES on the FACTORED IN YOUTH WEBSITE

Von Willebrand disEASE

  • Von Willebrand disease (VWD – also known as von Willebrand disorder) is an inherited bleeding disorder. This disorder is caused by when there is not enough von Willebrand factor in the blood or it does not work the way it should. It takes longer for blood to clot and for bleeding to stop.
  • VWD is the most common inherited bleeding disorder worldwide. More than 2,500 people have been diagnosed with VWD in Australia, but many more are thought to be undiagnosed. It affects both females and males from all racial backgrounds.
  • Most people with VWD have few symptoms. They may not be aware they have VWD until they have a serious injury, surgery or dental extractions, or bleeding after childbirth.
  • The form of VWD causing moderate bleeding problems is uncommon and the severe form of VWD is rare.
  • However, it is important to remember that there can be bleeding problems with all forms of VWD and any bleeding that occurs with VWD needs to be assessed and treated.
  • Bleeding in people with VWD usually involves the mucous membranes, the delicate tissues that line body passages such as the nose, mouth, uterus, vagina, stomach and intestines.

Does 'mild' mean few bleeding episodes? Not always. With all forms of VWD there can be bleeding problems. Some people with the mild form bleed quote often, eg with nosebleeds, bruising and heavy periods.

What is it like to have VWD?
READ PERSONAL STORIES from PEOPLE WITH VWD
HEAR YOUNG PEOPLE’S STORIES on the FACTORED IN YOUTH WEBSITE

Download our brochure About bleeding disorders

Sources:
Australian Bleeding Disorders Registry Annual Report 2021-22
Hermans C, Kulkarni R. Women with bleeding disorders. Haemophilia. 2018;24(Suppl. 6):29-36.

Date last reviewed: 1 February 2024

Important Note: This information was developed by Haemophilia Foundation Australia for education and information purposes only and does not replace advice from a treating health professional. Always see your health care provider for assessment and advice about your individual health before taking action or relying on published information. This information may be printed or photocopied for educational purposes.

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