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This month of March, Hemophilia Awareness Month, we’re exploring myths about hemophilia. Myths are stories, sometimes created by people in an attempt to make something understandable when scientific information is unavailable. The ancient Greeks had many myths that we still reference. Remember the myth of the demigod warrior Achilles, son of Theta, a sea goddess, and Peleus, a mortal? His mother dipped the infant in the river Styx, which was said to have protective powers, so that Achilles could be kept invulnerable in battle. But his mother held the infant by his heel, which did not get wet, and so his heel was his weak spot. Today, we say that someone with a weakness has an “Achilles heel.”
Myth: Children with hemophilia will grow out of it.
This is a myth. Someone who says this to you does not understand the science behind hemophilia.
Truth: Hemophilia is a lifelong condition. Your child does not have a disease that will get better or go into remission. Your child will not grow out of hemophilia: the mechanism for producing clotting factor is defective. Hemophilia is part of his genetic makeup, just like traits for hair or eye color, which can’t be outgrown.
But someday–maybe someday soon–we will have gene therapy, and your child may be cured.
Myths evolved in history when people lacked scientific information to explain natural phenomenon. During March, Hemophilia Awareness Month, we’re looking at hemophilia myths!
Last week, Myth #1: The Royal Disease. Here’s Myth #2. A small cut will cause blood to rush out, and the child will bleed to death.
Truth: People with hemophilia do not bleed faster than anyone else. But they will bleed longer because their blood doesn’t clot properly. Still, not every cut will continue to bleed just because a person has hemophilia. Some cuts, especially small ones, stop bleeding on their own.
Do you know the three steps in coagulation? 1) Vasconstriction 2) Platelet plug 3) Fibrin net.
Perhaps because hemophilia is so rare, it has generated many myths. Myths are stories, sometimes created by people in an attempt to make something understandable when scientific information is unavailable. Remember the Greek tale of Pandora’s Box? Pandora was the first woman on earth. She was given a wedding gift from the gods, a beautiful container. But she was warned never to open it. Driven by curiosity, she disobeyed the gods and opened it. Inside were evils— hate, disease, pain—that flew out of the container and escaped into the world. This story was invented by the ancient Greeks to explain sickness and suffering, because they didn’t know about bacteria and viruses. Some myths develop from a nugget of fact or experience, but then take on a life of their own within certain cultural settings.
Becoming familiar with the most widely held myths about hemophilia and their sources will help you explain the facts of the disorder to others. During this month, which is Hemophilia Awareness Month, we’ll discuss some common myths about hemophilia.
Myth #1! Hemophilia is a royal disease.
The Truth? Anyone can get hemophilia—rich or poor, famous or unknown. Hemophilia was dubbed the royal disease because in the 1800s, hemophilia affected the family of Queen Victoria of England, who was a carrier of the hemophilia gene. Hemophilia was transmitted to three other royal families when Victoria’s daughters and granddaughters, also carriers, married into the Russian, German, and Spanish royal families. Though it’s no longer known to be present in any European royal family, hemophilia is still often associated with royalty.
Question 1: What type of hemophilia did the English royal family have, A or B?
Question 2: Why does the present royal family no longer have hemophilia?
Order a copy of Alexis: The Prince Who Had Hemophilia to learn more!