Royal Disease

Hemophilia Myths and Facts

Myths are stories or beliefs created to explain phenomena when scientific knowledge is lacking. Sometimes they persist even when scientific explanations are available, because people can get emotionally impacted by myths. When it comes to blood, people have strong emotional beliefs and feelings, and this may prolong myths. So read this nifty list of myths which includes the facts that dispel the myth. You can download a pdf of this with graphics here.  Enjoy!
Hemophilia is a medical condition that impairs
the body’s ability to control bleeding. There are about 20,000 people with
hemophilia in the United States and with the condition being so rare, many
people may not know much about it. Below we dispel 10 common myths to help
you better understand hemophilia.
If a person with hemophilia gets a minor cut,
they’ll bleed to death.
People with hemophilia don’t bleed faster, but
they do bleed longer because they’re missing a protein in their blood that
assists in forming stable clots. Minor cuts are not a cause for concern and
will usually heal on their own.1
Only males have hemophilia.
It’s true that hemophilia does primarily affect
males because it’s an X chromosome-linked medical condition.1,2
However, females who are carriers can also experience bleeding symptoms.
Though extremely rare, a daughter who is born to a father with hemophilia and
a mother who is a carrier can inherit the severe form of the condition.3
People with hemophilia always have a family
history of the condition.
Nearly one-third of hemophilia cases are not
genetically based and have no family history of the condition.1
All people who have hemophilia are diagnosed at
Due to a lack of bleeding at birth or because the
family doesn’t have a history of hemophilia, some people who have hemophilia
may not be diagnosed until months after birth, as toddlers, or even later,
depending on the severity of their
medical condition.4,5
Children with hemophilia will grow out of it.
Hemophilia is a lifelong condition, a bleeding
disorder caused by the absence of an essential blood clotting protein.1 While
there is no available cure for hemophilia, research continues to progress and
shows promise. Scientists are currently researching how gene therapy can help
the body produce its own clotting factor.2
Hemophilia is the same for all patients.
People can have hemophilia A, which is defined by
low levels of clotting factor VIII (8), or hemophilia B, defined by low levels
of clotting factor IX (9).1,3 The severity of hemophilia is
categorized as mild, moderate, or severe.1 Additionally, about 15% to 20%
of people with hemophilia will develop an antibody—also called an
inhibitor—which is one of the most serious complications of the condition.6
People with hemophilia shouldn’t exercise or play
Exercise is important for people with hemophilia
because it strengthens muscles, which helps protect joints, and reduces the
risk of being overweight, which places added stress on joints. They should
work with their health care professional to create a fitness plan that’s
right for them.7
Hemophilia is a “royal disease.”
While it’s true that in the 1800s hemophilia did
affect the royal family of Queen Victoria of England, hemophilia affects
people regardless of race, ethnicity or economic status.2,4
Hemophilia causes AIDS.
Hemophilia doesn’t cause HIV/AIDS. Unfortunately,
from 1978–1985, many people with hemophilia did contract HIV when they
received treatments made from tainted blood donations. The blood supply is
now much safer due to improved donor screening and advanced purification
methods, and also, many newer treatments aren’t made from donated human
blood. There hasn’t been a documented case of HIV from the use of hemophilia
treatments since 1987.2
People with hemophilia can’t live normal lives.
With proper treatment, most people with
hemophilia lead long, full, and productive lives.4
1.    National Hemophilia Foundation.
Hemophilia A.
Accessed November 3, 2015.
2.    National Hemophilia Foundation.
History of Bleeding Disorders.
Accessed November 3, 2015.
3.    Midwest Hemophilia Association.
Myths and Facts About Hemophilia.

Myths and Facts About Hemophilia

Accessed November 3, 2015.

4.    Indiana Hemophilia &
Thrombosis Center, Inc. Hemophilia Awareness Month – Fast Facts for Patients.
Accessed November 3, 2015.
5.    Centers for Disease Control and
Prevention. Hemophilia Diagnosis. Accessed June 7, 2016.
6.    Centers for Disease Control and
Prevention. Hemophilia Inhibitors. Accessed June 13, 2016.
7.    National Hemophilia Foundation.
Playing It Safe: Bleeding Disorders, Sports, and Exercise.
Accessed November 3, 2015.
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July 2016

Rasputin, the Ultimate Health Care Provider?

Following up on the news that the “Royal Disease,” hemophilia, apparently was factor IX deficiency in Queen Victoria’s lineage, comes this delightful report from my friend, Richard Atwood, self-made historian about all things hemophilia. He also happens to be president of the North Carolina Chapter. While Richard does not have hemophilia, he is fascinated by hemophilia and keeps what must be the most extensive listing of hemophilia in literature and history.

So he sent me this message: “Located on the northern California coast in Fort Bragg is the North Coast Brewing Company, proud purveyors of the award winning Old Rasputin Russian Imperial Stout. Rasputin was the consummate hemophilia health care provider, surrounding himself with wine, women and song, and then applying his hypnotic stare and laying on his hands to ease the symptoms of a hemophilic bleed.

Check out the brewery website — — to view the available merchandise for the Old Rasputin ‘Never Say Die’ t-shirts and hats, and then enjoy the brew by imbibing in San Francisco.”

Do you know why the motto is “Never Say Die”? If not, and you have hemophilia in your family, look it up! Very funny.

The annual NHF meeting is in San Francisco from October 28-31. Halloween, Rasputin, beer… sounds like a good time! I’ll be there– at NHF, not the brewery. For now, I am in London, home of the royal family that gave hemophilia its royal disease tagline.

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