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Who is affected

Haemophilia is a hereditary disorder; it is something you are born with. It cannot be caught from another person like a cold.

The most severe forms of haemophilia almost only affect males (see Inheritance as to why). Women can be seriously affected, although this is extremely rare. Many women who are carriers of the haemophilia gene do, however, have symptoms of mild haemophilia, which can seriously affect their quality of life.

While haemophilia may rarely affect females, there are other bleeding disorders that affect males and females equally. In fact, because of menstruation and childbirth, some bleeding disorders, such as von Willebrand’s Disorder can have a major impact on affected women (see von Willebrands Disorder and Other Bleeding Disorders).

There is no cure for haemophilia – it is a chronic illness that will affect a person for their whole life. The life expectancy of someone with haemophilia, and their quality of life, varies greatly depending on whether they receive proper treatment. Globally, 75% of people with a bleeding disorder do not receive adequate treatment, or any at all [visit for more information]. Without sufficient treatment, many people with haemophilia die before they reach adulthood. However, with proper treatment, life expectancy for people with haemophilia is almost the same as those without haemophilia. Although people with haemophilia and related bleeding disorders living in New Zealand are fortunate in that they have access to factor replacement therapy, they still face a range of challenges throughout their lifetime.

While haemophilia is a genetic condition, some people are affected by a form called acquired haemophilia, which means their blood spontaneously produces an antibody against blood clotting factor VIII. Acquired haemophilia is a very rare condition that only affects between 1 and 4 people in every million. Pregnancy and autoimmune diseases such as rheumatoid arthritis and cancer may increase the risk of developing acquired haemophilia. However, acquired haemophilia can also emerge in elderly people without any risk factors. It can be a serious condition: many people develop severe bleeds and up to 1 in 5 may die from bleeding if not properly diagnosed. It is treatable using Immune Tolerance Therapy (ITT) or a combination of other medications to stop bleeding.


Next: Inheritance
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