Myths

A Pandora’s Box of Myths

Laurie Kelley March 5, 2023

It’s Bleeding Disorder Awareness Month! True: Designated in 1986 as Hemphilia Awareness Month this is the month to educate the public—and ourselves—about bleeding disorders.

I usually start with what hemophilia is not. 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. Here are some common myths about hemophilia.

(Read Pandora’s Box here by Nancy Lister Swayzee)

Myth: Hemophilia is a royal disease.

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.

Myth: A small cut will cause blood to rush out and a child to 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.

Myth: Children with hemophilia cannot play sports.

Truth: Children with hemophilia enjoy a wide variety of sports, including swimming, baseball, tennis, running, and martial arts. You’ll realize this someday when you’re chauffeuring your sports fan to various afterschool activities! High-impact contact sports such as football, hockey, and boxing are not advised. Physical activity is always encouraged for children with hemophilia.

Myth: Children with hemophilia must wear helmets and protective gear.

Truth: Although some parents place protective helmets or knee pads on their toddlers, it’s uncommon for a child with hemophilia to wear protective gear for normal activities. Medical treatments today are excellent and easy, offering a normal lifestyle. Of course, all children must wear protective gear when participating in risky activities: helmets should always be worn when riding bikes or motorcycles, ores, or when skiing or snowboarding. Oh yes, your child will be able to do these things one day!

Myth: Children with hemophilia must attend a special needs school.

Truth: Except for having a defective blood protein for blood clotting, our children have normal health and intelligence. They can be enrolled in any school. Overall, your child is normal and will be treated as such by the school system and the public.

Myth: Children with hemophilia need to be placed in special schools or classes.

Myth: Children with hemophilia will grow out of it.

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. However, there is now a genetic therapy available for hemophilia B that will give, with one shot, protection against uncontrollable bleeds for a long time.

Myth: Hemophilia is caused by something you did during pregnancy.

Truth: Nothing you did while pregnant gave your baby hemophilia. Women who have perfect pregnancies and follow every safety precaution can give birth to children with hemophilia. There’s nothing you could have done to prevent hemophilia; nor could you have changed your child’s hair or eye color. Hemophilia is simply part of his genetic makeup.

Don’t feel guilty; get educated, and educate others. Now’s the month especially to do this!

Hemophilia Myth #3: Outgrowing

Laurie Kelley March 21, 2021

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.

But someday–maybe someday soon–we will have gene therapy, and your child may be cured.

Hemophilia Myth #2: Cuts

Laurie Kelley March 14, 2021

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.

Blood vessel injury, vasoconstriction, plateletplug, fibrin net

Hemophilia Myth #1: The Royal Disease

Laurie Kelley March 7, 2021

Queen Victoria: the most famous
carrier of hemophilia

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!

Legends and a Real Life Legend

Laurie Kelley September 22, 2008

I’m in London this week for a conference on inhibitors; I’ll be speaking Wednesday to a group of nurses, as a guest of Grifols, manufacturers of Alphanate and Alphanine. I came early to visit my old friend Bill Boughton, who lives in Somerset, two hours west of London. Bill is an inspiration: we met over the phone at least 10 years ago when he began, at the age of 75, to get involved in helping boys with hemophilia in Romania get factor. Imagine! His connection to Romania? He and his wife adopted a 7-year-old Romanian orphan.

Bill has since then helped Project SHARE get some factor to Romania. (Grifols is also a sponsor of Project SHARE). He also attended two summer camps in Romania, created and sponsored by STAR Children Relief, directed by our mutual friend Adriana Henderson. There was Bill, age 83, driving from London to the Black Sea to befriend some lovely but very poor boys with hemophilia. And he did it all with wit, charm, incredible energy, and genuine generosity. He since sponsors a young man with hemophilia there.

So in coming to England it would be hard not to visit this octogenarian volunteer, who simply forgets his age. He loves life, and he engages fully in it. I took a 6-hour flight to London, and the next day (yesterday) took a lovely two-hour train ride through the countryside to see Bill and his other daughter Emma, age 23. It was a great reunion, and not one to sit still long, Bill invited me to come and see nearby Glastonbury.

Glastonbury is a charming town with an amazing reputation: site of the fabled Avalon, home of King Arthur. Indeed, at the ruins of the medieval abbey, which were stunning, we saw the “graves” of King Arthur and Guinevere. Glastonbury is reputed to have had the oldest Christian Church in England, and is a pilgrimage site. Also it is reputed to be where Joseph of Arimathea, said uncle to Jesus, came. Joseph of Arimathea is famous for asking Pilate for the body of Jesus, and burying it in the tomb he had intended for himself. In the poem “Jerusalem,” by poet and writer William Blake, the question is posed whether Jesus himself came to England, to Glastonbury with his uncle?Another myth says that Joseph, upon reaching Glastonbury, planted his staff, which immediately blossomed into a thorn tree, which flowered every Christmas day. Cromwell ordered the tree cut down, and it is said that as it fell, its thorns blinded the axe man in his eye. Glastonbury is full of superstitions, healers, tarot card readers, and alternative medicine shops. Allegedly, some of them sell leaves that sprout from a cutting of the original thorn tree. Interesting stuff!

One more myth: Joseph is said to have buried the Holy Grail (the cup Jesus drank from at the Last Supper) just below the Tor (hill), where a spring began to flow and the water was supposed to bring eternal youth to whoever would drink it. I looked everywhere desperately for such water, but alas I am still 50! I do think Bill found it some time ago: not only does he carry on like someone half his age, he doesn’t look at all 85. Is it the water, or his love of helping others that keeps him young at heart and health?