The Center for Disease Control and Prevention shared that Inhibitors are complex, costly health problems that can affect people with hemophilia and von Willebrand disease (VWD) type 3. This Bleeding Disorders Awareness Month, learn about inhibitors and read Anthony’s story on living a full life with an inhibitor.
All people with hemophilia and VWD type 3 are at risk for developing an inhibitor – an antibody – to treatment used to stop or to prevent a bleeding episode.
Hemophilia and VWD type 3 are bleeding disorders in which the blood does not clot due to missing or low levels of proteins, known as ‘clotting factors,’ in the blood. People with hemophilia and VWD type 3 receive treatment products called ‘clotting factor concentrates’ to replace missing or low blood clotting factor in their blood. This procedure (known as infusion) is carried out by injecting commercially prepared clotting factor concentrates into their vein.
When a person develops an inhibitor, the body thinks that the clotting factor concentrates are harmful, foreign substances and rejects the clotting factor concentrates as treatment. Instead, the body tries to destroy the clotting factor concentrates with an inhibitor to protect the body, which makes it harder to treat a bleeding episode.
How do I know if I have an inhibitor?
Only a blood test can determine if an inhibitor is present and it can measure the amount present. Inhibitors are complex, and not everyone with hemophilia and VWD type 3 will develop an inhibitor. Researchers do not yet know why some people will develop an inhibitor and why some will not, but research studies are being conducted to learn more about them. Inhibitors can appear at any time, so it is important that all people with hemophilia and VWD type 3 be tested for an inhibitor each year.
Eligible individuals can receive free inhibitor testing at federally funded hemophilia treatment centers (HTCs) through the Community Counts Registry for Bleeding Disorders Surveillance.
Can inhibitors be treated?
Inhibitors are difficult and expensive to treat, and every case is different. Inhibitors can appear and disappear with treatment, and at times an inhibitor can disappear without treatment (known as ‘transient inhibitors’). Treatment options, such as high-dose clotting factor concentrates, bypassing agents, and immune tolerance induction (ITI) therapy can help reduce the amount of inhibitors present.
Inhibitors require specialized medical expertise, and it is recommended that people with inhibitors seek treatment at an HTC because they specialize in treating people with bleeding disorders. Find an HTC.
Where can I learn more?
Inhibitors can be challenging, but there are organizations, support communities, and resources available to help support people with bleeding disorders and inhibitors.