Hemophilia and other bleeding disorders, like Von Willebrand disease, are often misunderstood — from the ill-informed idea that hemophiliacs can die from a papercut or scratch, to the dangerous misinformation that those with bleeding disorders have a greater risk of spreading HIV/AIDS.
These misconceptions make life harder for hemophiliacs and others with bleeding disorders.
Moreover, the spread of false information encourages the public to remain uninformed about bleeding disorders, potentially reducing donations to research groups and foundations working to create cures.
So, while we have you here, let’s go ahead and debunk some of the most common hemophilia and bleeding-disorder myths.
MISCONCEPTION #5: If a person with a bleeding disorder sustains a small cut or scrape, he or she will bleed to death.
THE TRUTH: Hemophiliacs and people with Von Willebrand disease don’t bleed harder, or more, than anyone else. They do bleed for longer, because their blood does not contain enough of the clotting factors that help create wound closure. In fact, even back in 1987, experts knew that hemophiliacs are “no more likely to bleed profusely from superficial cuts and scrapes.”
MISCONCEPTION #4: All people with bleeding disorders carry bloodborne, immunodeficient diseases like HIV/AIDS and hepatitis.
THE TRUTH: This hurtful and dangerous myth was widely believed up till the 1980s. It’s possible that misunderstanding the tainted-blood cases of that decade led people to believe that all hemophiliacs carry HIV/AIDS, as an estimated 90% of hemophiliacs who used these contaminated blood products did contract HIV.
However, since 1986, there have been no further known cases of HIV resulting from the use of clotting factor. Most hemophiliacs now use recombinant clotting factor, made with little to no human blood.
MISCONCEPTION #3: If you even touch a person with a bleeding disorder, you can hurt him or her.
THE TRUTH: This is not the case. However, most hemophiliacs and people with bleeding disorders, especially those whose disorders are severe, do need to avoid the contact that occurs in certain sports (especially heavy-contact sports like hockey, football, and wrestling).
Limited-contact sports like basketball and soccer can be safe for hemophiliacs who infuse a preventive dose of clotting factor before heading onto the court or field. Find Hemophilia.org’s list of sports, and their associated levels of risk, here.
However, normal contact — like touching someone’s arm, hugging, or holding hands — is perfectly harmless to all people with bleeding disorders!
MISCONCEPTION #2: Hemophilia is always passed down through families.
THE TRUTH: While most cases of hemophilia are due to an X-chromosome-linked gene mutation, the gene defect responsible “has one of the highest rates of spontaneous brand new mutations of any human genetic disorder,” says Dr. Jim Fahner, Hematology/Oncology division chief at Helen DeVos Children’s Hospital in Grand Rapids, MI. “Some researchers estimate that as many as one-third of the cases of hemophilia are new mutations with no family history of the disease.”
MISCONCEPTION #1: Only boys are born with or develop bleeding disorders.
THE TRUTH: One in 5,000 boys is born with hemophilia. Boys are more likely to be born with hemophilia, because they inherit the recessive X-linked gene defect from their mothers. However, girls can be born with hemophilia if the father has it and the mother is a carrier of the defect.
Von Willebrand disease affects males and females equally, affecting between 1% to 2% of the world’s population.
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