It’s safe to say that there are a lot of misunderstandings about hemophilia outside the bleeding disorders community. Often the only thing most people know is that “it has something to do with bleeding.” Lacking awareness, people easily fall for long-held, but wrong, beliefs.
How many of these hemophilia myths have you heard?
Myth: If a person with hemophilia gets so much as a paper cut, he or she will bleed to death.
Fact: People with hemophilia bleed longer, not faster. This is because a protein in their blood that’s essential to clotting is either missing or doesn’t work properly. In most cases, a minor cut or scrape will stop bleeding on its own with the help of just a Band-Aid. Internal bleeding caused by a trauma is the more serious concern as it can lead to organ and tissue damage.
Myth: People with hemophilia have a short life expectancy and can’t live normal lives.
Fact: Thanks to improved prophylaxis treatment, as long as people with hemophilia pay attention to their condition and overall health, they can live a full, active and long life.
Myth: Only men have bleeding disorders.
Fact: Although hemophilia is much more common in men, women can have it. About 1/3 of women who are carriers of hemophilia experience bleeding symptoms. In addition, as many women as men have von Willebrand disease, another type of bleeding disorder.
Myth: It’s possible to outgrow hemophilia.
Fact: Hemophilia is a genetic disease, and because the body can’t repair the defective blood factor gene that causes it, people have hemophilia for life. Scientists are searching for a cure, however, via gene therapy.
Myth: Hemophilia can cause HIV/AIDS.
Fact: In the early 1980s, about 8,000 people with hemophilia contracted HIV after being exposed to contaminated clotting factor made from HIV-tainted blood donations. Since 1985, the US has required all blood donations be tested for HIV, and since 1986 there have been no known cases of the virus in the US stemming from the use of clotting factor. Clotting factor is much safer now. Today, many people with bleeding disorders use “recombinant” or manufactured clotting factor, which contains little to no human blood.
Myth: People with hemophilia have a family history of the disease.
Fact: Almost 1/3 of hemophilia cases occur in people with no family history of the bleeding disorder. That’s because the gene mutation that causes hemophilia can occur spontaneously.
Myth: Hemophilia is hemophilia is hemophilia…it’s the same for everyone.
Fact: There are two types of hemophilia: A and B. A person with hemophilia A has low levels of clotting factor VIII; a deficiency of clotting factor IX causes hemophilia B. In addition, the disease can be mild, moderate or severe, depending on the percentage of factor levels in a person’s blood.
Myth: Hemophilia always skips a generation.
Fact: Due to the genetic inheritance patterns of hemophilia, the condition can skip a generation, but it doesn’t always.
Myth: A woman with a bleeding disorder can’t have children.
Fact: Women with bleeding disorders certainly can have children. Often, women with von Willebrand disease have a normal pregnancy without complications. Still, a woman should consult with her hematologist and obstetrician to assess and address any pregnancy risks based on her individual health.
Myth: Hemophilia is a royal disease and all people with hemophilia are descendants of Queen Victoria.
Fact: Queen Victoria was a carrier of hemophilia, and the condition was passed on through generations of European royal families. While people in the bleeding disorders community are certainly noble and dignified in many ways, hemophilia is found throughout the world in all types of people—commoners and royalty alike.