FAQs About Hemophilia With Inhibitors

Here are some frequently asked questions about hemophilia with inhibitors.

What's hemophilia?

Hemophilia is a bleeding disorder. It is caused when someone is missing one or more clotting factors in his or her blood.9

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What's a clotting factor?

A clotting factor is a protein found in the blood. There are 12 different types of clotting factors. They work together to stop bleeding.3

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What's an inhibitor?

Sometimes the immune system makes a mistake and produces an antibody that destroys natural protectors of the body. Scientists aren't sure why this happens.1

The immune system usually protects our bodies from disease. It does so by producing antibodies — or inhibitors — when it senses a foreign substance in the body. In the case of hemophilia, the immune system thinks factor treatment is attacking the body, so antibodies are produced to destroy that substance.1,6

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Why won't factor treatment work anymore?

When antibodies attack the clotting factor, the inhibitors stop the factor treatment from working.1,4

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Who develops an inhibitor?

No one knows why some people with hemophilia get inhibitors and others do not. But risk factors, like genetics, treatment exposure days, and patient age can increase the chances of developing an inhibitor.1,3

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What are the signs and symptoms of inhibitors?

Only a doctor can diagnose and test for inhibitors. But you can help your doctor by looking for these signs when getting treatment:6,18

  • It is taking a long time to stop a bleed
  • You need more factor replacement treatment than usual

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How are inhibitors diagnosed?

A doctor diagnoses inhibitors by using a blood test called the Bethesda inhibitor assay.4,6

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What are the treatment options for hemophilia and inhibitors?

Treatment is based on the type of inhibitor a person has. Inhibitors might be treated with factor replacement treatment, non-factor therapy, or bypassing agents.4,18

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Does having an inhibitor mean I can't do anything?

Having an inhibitor means you might have to make some trade-offs from time to time, but many activities are fine. Check with your doctor or hemophilia care team if you're wondering what activities are best for you.3

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Are there support groups for people with hemophilia and inhibitors? What about their families?

Living with hemophilia and inhibitors, or caring for someone who is, can have its challenges. It's important that you ask for help when you need it. You can find support groups online, or ask your doctor or hemophilia care team for groups near you.3

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What are the best activities for people with hemophilia and inhibitors?

It's important to stay active and there are many options for you to enjoy.

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What should I ask my doctor about hemophilia with inhibitors?

It's a great idea to ask your doctor as many questions as you can about hemophilia with inhibitors.

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Can girls have hemophilia with inhibitors too?

Yes. But hemophilia is based on genetics, therefore, a small percentage of people with hemophilia are girls and hemophilia with inhibitors is not common. Boys have one X chromosome and one Y chromosome. Boys only need to inherit one affected X chromosome to have hemophilia. A girl would need two affected X chromosomes to have hemophilia; however, they may have one affected X chromosome and be a carrier. Sometimes, girls with one affected X chromosome can show symptoms.3,9

Can my child get hepatitis or HIV/AIDS from treatments?

Today, the risks of this occurring have been almost completely stopped due to several scientific advances. These include:4

  • Accurate screening of all blood donors for hepatitis and HIV
  • Purification and treatment of all human blood products with the aim of removing and/or killing viruses
  • Development of recombinant factor replacement — synthetic products that do not use human blood; although, most recombinant products still contain blood-borne additives

To increase safety, it is recommended that all children with hemophilia receive immunizations for hepatitis A and B, and that you / your child receive an annual check-up at a hemophilia treatment center.3