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

Valentine’s Day with the Most Famous Carrier

I went to see the movie “Young Victoria” yesterday, which chronicles the most famous hemophilia carrier’s 1837 ascension to the throne as just a girl of 18. It also tells of her meeting with and eventually love for Prince Albert of Belgium. Lavishly filmed, I felt as though I had gorged on Godivas, taking in the costumes, scenery and gold. I thought the performances by Emily Blunt as Victoria and Rupert Friend as Albert were understated and well done. It was a very enjoyable movie. I was surprised it was such a love story, and the timing was perfect as it was a day before Valentine’s Day.

We always seem to think of Britain’s longest reigning monarch as a blimpy old woman, but here, she is beautiful, confident and headstrong. As you watch the courtship of the Princess and Prince, you marvel at how much they loved one another (by all accounts they truly did), and also by their tremendous wealth and privilege: Victoria cannot even walk down the stairs by herself, lest she fall. She always needs to hold someone’s hand (she abolishes that practice when she becomes queen). Despite the young love, and their wealth, one thing remains unsaid but we all know it happens: Victoria and Albert eventually have a child with hemophilia, Leopold.

I watched the ornate movie, and the tender love, and felt so sad for them! Like us, this young couple would have a child who suffers, but unlike us, there was no treatment. It was really poignant to see this beautiful young couple, blindly in love, happy, not knowing what fate had in store for them.

Victoria and Albert had nine children: three girls who were carriers and of course, Leopold. Eventually, she passed hemophilia on to the Russian, Spanish and German royal families. This is why hemophilia is called the “royal disease.” She had 42 grandchildren!

Albert died at age 42, after 22 years of marriage. The movie ends with a title which revealed that Victoria had his clothes laid out every morning for the next 40 years, in his memory. She forever wore black following his death. A movie worth seeing, especially if you have hemophilia in the family.

Great Book I Just Read
Child of the Dark by Carolina Maria De Jesus

This may quite possibly be the best book I’ll read all year. I don’t think I’ll ever read another book like it.

Carolina Maria De Jesus (1914-1977) lived in the favela, the slums of Sao Paulo, Brazil, surviving only one day at a time by picking up paper and scrap metal and selling it. Intelligent and single, she kept a journal, which became this book. She writes so much about hunger, the horror of slum life, rummaging through garbage to find something to feed her three children, and always hoping for a better life. Her insights are amazing and her description of the slum is simple but painfully portrayed. I couldn’t put this book down. I myself have been through slums in Central America, Brazil, Kenya and India. I often think that we could not live one day in the shoes of the poor, and after reading this book, I know it is true.

As amazing as her journal writing is, a co-author provides an epilogue: what happened after her book is published. Caroline, illegitimate and poor, rockets to fame as she becomes Brazil’s best-selling author. This book is a must read! Four stars.

Rasputin, the Ultimate Health Care Provider?

Following up on the news that the Royal Disease, hemophilia, apparently is factor IX deficiency, 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.

Old Rasputin Russian Imperial Stout Awards
2006 Stockholm Beer and Whiskey Fest
2006 World Beer Championships, Chicago
2005 World Beer Championships, Chicago
2004 World Beer Championships, Chicago
2004 Spring Beer & Wine Fest, Portland
2002 GABF, Imperial Stout
1999 GABF, Imperial Stout
1999 World Beer Championships, Chicago
1998 World Beer Championships, Chicago
1997 World Beer Championships, Chicago
1996 World Beer Championships, Chicago
1996 World Beer Cup, Imperial Stout

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