Recently, I was browsing the website of the National Hemophilia Foundation and came across a series of videos encouraging people with hemophilia to have regular testing for inhibitors. As I watched the videos, it occurred to me that women with hemophilia don’t talk much about inhibitors.
Perhaps this is due to women being more likely to have milder forms of the disease and the low incidence — 5-8 percent — of people with mild or moderate forms of hemophilia developing inhibitors.
What’s an inhibitor?
Simply put, an inhibitor is an antibody that attacks invaders in the body. When a person with hemophilia develops an inhibitor, the antibodies fight against factor replacement products infused to help the blood to clot.
When someone with hemophilia A or B develops an inhibitor, it attacks the infused factor VIII or factor IX products. Their body struggles to form clots, even with medication. As a result, the person may continue to bleed. If they remain undiagnosed, the results could be disastrous.
The first sign of an inhibitor is bleeding that doesn’t stop, even when a substantial amount of factor product has been given.
Early diagnosis is important
Families who have to cope with inhibitors often report fears of emergency medical situations. They wonder what will happen if medical professionals are unable to control bleeding. However, though inhibitors are challenging to deal with, an undiagnosed inhibitor is worse.
The earlier inhibitors are caught, the better medical professionals can successfully treat or eradicate them. The Centers for Disease Control and Prevention recommends that those with hemophilia and von Willebrand disease type 3 receive annual testing for inhibitors. As inhibitors can develop at any age, this test should be a compulsory part of a yearly checkup.
Women also need inhibitor testing
Anyone with hemophilia can develop an inhibitor. Women with hemophilia and the medical professionals who treat them must acknowledge this reality. I know men who receive annual testing and some women who don’t. If you or your family member with hemophilia — female or male — is not being tested regularly, please consider discussing this with your healthcare provider. Your health and safety are important, and you deserve the best and earliest care possible.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.