Welcome to the hemophilia program 

Hemophilia

Hemophilia is a lifelong, hereditary disorder. In 1 out of 3 cases, there is no history in the family; the cause is a new genetic mutation. Thus hemophilia can affect any family. The two types of hemophilia, A and B, affect 3,000 Canadians.

The blood of people with hemophilia doesn’t clot normally. They don’t bleed more profusely or more quickly than others…but for a longer period if not treated. External wounds are usually not serious.

Far more important is internal bleeding into joints and muscles. Untreated, this is excruciatingly painful and leads to severe crippling. When bleeding occurs in a vital organ, especially the brain, it can be fatal. 

The most severe forms of hemophilia affect almost only males. Women who are carriers, however, often have symptoms and can have bleeding problems that affect their quality of life. 

Von Willebrand Disease (VWD) 

Von Willebrand disease (VWD) is the most common bleeding disorder. One in 100 Canadians (300,000 people) carry the gene for von Willebrand disease. Symptoms affect an estimated 30,000 Canadians, both male and female. Many of these people have yet to be properly diagnosed. Life-threatening hemorrhaging can occur after childbirth, surgery or trauma. 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. Effective treatments exist for von Willebrand disease. 

There are also other more rare typed of factor deficiencies including platelet function disorders as well.  

• Bleeding into joints, especially knees, elbows and ankles 
• Bleeding into soft tissues and muscles 
• Easy bruising 
• Frequent, prolonged nose bleeds 
• Prolonged bleeding from the gums when baby teeth fall out or after tooth extraction 
• Abnormal bleeding after surgery, childbirth or trauma 
• Heavy, prolonged bleeding during menstruation 
• Bleeding from the umbilical cord stump after birth 
• Cerebral hemorrhaging (bleeding into the Brain) 

Speak with your primary care provider if you experience any of these symptoms, or suspect a bleeding disorder. 

Clotting factors and other medications are usually effective in treating people with hemophilia. Children can grow up to lead full and active lives.  

When to Contact Us 

It is important to contact the Hemophilia Program when: 

• You have a bleed that has required treatment 
• You have a procedure or surgery planned (your current treatment may not be sufficient) 
• You require supplies (2 week notice is ideal) 

In an emergency 

In the event of an emergency, we encourage you to get the care that you need from the nearest hospital emergency department. Please visit the Canadian Hemophilia Society website to download the “Factor First card”. Please make sure to bring your card to your visit. 

Useful Links 

• Canadian Hemophilia Society

• World Federation of Hemophilia