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What is Hemophilia?

The following information applies to patients with congenital hemophilia A or B with or without inhibitors. Click here for congenital factor VII deficiency or acquired hemophilia, or Congenital Factor XIII Deficiency.


What is Hemophilia?

Hemophilia is a chronic, inherited bleeding disorder that primarily affects males. It is sex-linked, meaning that it is passed on from mother to child on the X chromosome. People with hemophilia A lack the factor VIII protein, and people with hemophilia B lack the factor IX protein. These blood clotting proteins are essential for proper blood clotting. Because they are missing these factor proteins, people with hemophilia have a tendency to bleed longer than most.


About bleeds

Bleeds are a big part of hemophilia. They can come from an injury or spontaneously. Spotting a bleed is vital. The more you know about spotting a bleed, the quicker you’ll be able to start treatment.

Before you can treat a bleed, you must know the signs. Bleeding can occur inside or outside the body. Bleeds inside the body can be harder to spot. Kids may be too young to say how they feel. So knowing the unique signs in children can help.


Signs and symptoms

There are many types of bleeds. Bleeds can happen in the joints, muscles, head, spine, and the stomach or intestines.

Joint bleeds are the most common. They can happen in any joint, but the knees, ankles, and elbows are the most common. Not treating joint bleeds quickly may result in more blood in the joint that may cause damage. You could lose your range of motion, have pain when you move, or even lose the ability to walk on your own. Learning the language of your own body can help you identify joint bleeds more easily—making earlier treatment possible.
 

Click through the tabs below. It will help you learn how types of bleeds affect the body and what signs to look for.
Bleed management

Each person with a bleeding disorder is unique; and individualized treatment is important. Identifying therapies that stop bleeds quickly can reduce the blood in the joint. Work with your hemophilia treatment center (HTC) to design a plan that meets your specific needs. Together, you will find the therapy that works best to stop bleeds.


Inhibitors

Inhibitors are antibodies that stop, or inhibit, factor from working. Just as the immune system protects the body from things like bacteria and viruses, it sometimes responds to factor as if it’s one of these body invaders and makes antibodies – or inhibitors – to fight against the factor. Inhibitors only develop after the person with hemophilia has received replacement factor.

People with inhibitors may need to use bypassing agents. These work to bypass the steps where factor VIII or IX is needed so the blood clot can form.

A blood test called the Bethesda assay or inhibitor assay is used to detect inhibitors. The test measures the amount of antibody in your blood.


Exercise and nutrition

Exercise and nutrition are important matters for anyone looking to lead a healthy lifestyle. But when it comes to hemophilia, you should keep a healthy body weight. Healthy weight can mean less stress on joints. As you age, maintaining a healthy weight through diet and exercise becomes important as you take care of health issues in addition to hemophilia. You should talk to your treatment team about the timing and exercises that are right for you.

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