Facts and Figures

Inherited bleeding disorders

One in 100 Canadians (300,000 people) carry an inherited bleeding disorder gene, and an estimated 30,000 of them have symptoms severe enough to require medical care. Yet many have not been properly diagnosed!
There are no cures for inherited bleeding disorders. They are a life-long condition.
Effective treatment is available for those diagnosed. Left untreated, however, bleeding disorders can be life-threatening.
Blood products, their recombinant substitutes, and other drugs are effective in treating people with bleeding disorders, but they are not a cure!
The Canadian Hemophilia Society is active in ensuring the safety of the blood supply in Canada through constant vigilance and monitoring for all Canadians.

Hemophilia A and B affect 3000 Canadians. The most severe forms affect almost only males.
Hemophilia is a genetic disorder; however, in about 1 in 3 cases, there is no history in the family. The cause is a new genetic mutation. Thus hemophilia can affect any family.
The most common symptom is bleeding into muscles and joints. Untreated, this leads to severe crippling.
When bleeding occurs in a vital organ, especially the brain, it can be fatal.
In about 30 percent of people with hemophilia, the immune system reacts to reject the clotting factor that is infused to stop or prevent a bleed. This complication, called an inhibitor, reduces the effectiveness of treatment and can be very serious.
Women who are carriers often have symptoms of mild hemophilia and can have bleeding problems that affect their quality of life.
Thirty per cent of Canadians with hemophilia (700 people) were infected with HIV from tainted blood. Two-thirds of these people have passed away. Sixty-five per cent (1600 people) were infected with hepatitis C.

Von Willebrand Disease is the most common inherited bleeding disorder, with one in 100 Canadians (300,000 people) carrying the gene.
Symptoms affect an estimated 30,000 Canadians, both male and female, and can range from mild to severe.
Many of these people have yet to be properly diagnosed.
A woman’s quality of life can be more seriously affected. Heavy menstrual bleeding can lead to hysterectomies. These can be avoided if the woman is properly diagnosed and treated. Severe hemorrhaging can occur during childbirth.
Effective treatment exists for von Willebrand Disease.

There are many different kinds of platelet disorders. In these disorders, blood platelets do not function normally, resulting in blood not clotting properly.
In a few individuals, bleeding can be severe.
Some people have no symptoms at all until they have a serious injury or surgery.
As with von Willebrand Disease, many cases go undiagnosed for decades.

A small number of Canadians, probably fewer than 1000, suffer from rare factor deficiencies.
These people have low levels of a specific blood protein, either factor I, II, V, VII, X, XI, or XIII.
Symptoms vary from mild to severe.