The Most Famous Hemophilia Carrier

I’m preparing for a visit to Russia next
week, a country I have not been to since 1999. So I’ve been reading two
excellent books to prepare: Peter the Great and Nicolas and Alexandra, both by
Pulitzer-prize winning author Robert K. Massie.

These books, and last week’s post on
hemophilia myths, got me thinking: Do you know who the most famous carrier of
hemophilia was? Hint: It’s why hemophilia is dubbed “The Royal Disease.”
Queen
Victoria of England, one of England’s longest reigning monarch. Her 63-year reign became known as the Victorian era, and was the longest reign until
September 9, 2015, when Queen Elizabeth II surpassed her. Her era saw British
power at its zenith across the globe; Victoria believed that the British Empire
existed to civilize people in less developed countries and to protect them from
their own rulers and the aggression of neighboring rulers. Others saw the
purely commercial aspect of this world domination of lands and trade routes.
Victoria took the throne at age 18, and later married
her first cousin, Prince Albert of Saxe-Coburg and Gotha, in 1840. Over the
next seventeen years, she and Albert had nine children: Albert
Edward, (b. 1841), Alice (b. 1843), Alfred (b. 1844), Helena (b. 1846), Louise (b. 1848), Arthur (b. 1850), Leopold (b. 1853) and Beatrice (b. 1857).
The last child, Beatrice, was delivered under the care of Dr. John Snow, who
later became the founder of modern public health by discovering the
transmission mechanism of cholera (infected water). Snow used anesthesia on
Victoria, thus giving her pain-free childbirth for the first time! While Snow
did not invent anesthesia, he created a more convenient and safer way to administer
it.
When their nine children married into royal and noble families throughout Europe (for mostly
political reasons), Victoria was called “the grandmother of Europe,”
and indeed was called “Granny” by all her grandchildren and their spouses. 
Hemophilia was not known to exist in the
royal family before, but Victoria carried the gene for hemophilia B. Only
Leopold had hemophilia; two daughters, Beatrice and Alice, were carriers. They
later transmitted hemophilia to the Spanish and Russian royal families. 
Leopold grew up to be a tall, intelligent,
affectionate yet stubborn prince, whose willfulness often led to injuries and
bleeds, according to author Massie. The Queen was unusually attached to her
son, and worried over him incessantly. Victoria reported in one letter that
Leopold had been at death’s door four or five times. Eventually Victoria tried
to keep him confined to the upper floors of Buckingham Palace for his own
protection, even as a man! But he managed to get away to Paris for two weeks.
Eventually at age 29, he fell in love with a German princess, Helen of Waldeck.
They had a daughter. When Helen was pregnant a second time, Leopold fell,
suffered a brain hemorrhage and died at age 31.
 There was no treatment for hemophilia then, of course. Victoria was informed by telegram that her youngest son had died in Cannes. He was “the dearest of my dear
sons,” she lamented.
According to one of her
biographers, Victoria wrote an average of 2,500 words a day during her adult
life, and kept a detailed journal, which eventually encompassed 122 volumes. From this we
learned a bit about hemophilia in those days.  The
Queen didn’t know what type of hemophilia her son had or if there even were
types; only much later, through genetic testing, was the family found to have
hemophilia B. While the mechanisms weren’t entirely understood, the royal
family knew that hemophilia could be passed down from generation to generation.
And it was; when it hit the Russian royal family, it would change the world.

For more information, read Robert K. Massie’s excellent books, or view “Nicolas and Alexandra,” a major motion picture and excellent portrayal of the last years of the Russian monarchy. Available on Amazon.com.  Robert K. Massie also has an adult son, Robert K. Massie, Jr., who was later cured of his hemophilia through a liver transplant. His life is exquisitely portrayed in the book Journey.

My Stars, Our Future: Astrology and Hemophilia

Do you believe in astrology? The idea that the alignment of the stars at your time of birth can determine personality traits and more?
I’m a Scorpio, and according to the books, a near-perfect one, personality wise. Intense, probing, passionate. Right down to the fact that we love wearing black. 
Our colleague Richard Atwood of North Carolina has uncovered a fascinating history of hemophilia and astrology, which he writes may have more in common than might be
expected. —Laurie

Hemophilia and other genetic disorders have been
specifically studied in the field of medical astrology. The vision that medical
care would be enhanced and better understood through astrology never
materialized, but it leads to speculations on what might have happened to
hemophilia if medical astrology had become a legitimate discipline of inquiry.

 John Addey (1920-1982) wrote the article “Harmonics, Genetics and Disease” and Charles Harvey (1940-2000) wrote the article “Hemophilia – An Inherited
Disease.” Cambridge
Circle, Limited, published these two articles in a 19-page, single-stapled
pamphlet with the identifier New Directions 1. This implies that the pamphlet
is intended as the first in a series. No date of publication for the pamphlet
is provided, yet Addey mentions his new book, Harmonics in Astrology.
Never stated as such, that book was published in 1976.1  


Addey broaches the topic of medical astrology and the
relationship between astrology and heredity. He asserts that “a knowledge of astrology is a
valuable adjunct to the healing art.”
Then in a statement combining realistic pessimism with opportunistic
optimism, Addey adds, “Unfortunately,
astrology is not part of the conceptual framework of modern medicine, but we
can be assured that this state of affairs is about to change.” Unfortunately for Addey, his
prediction remains unfulfilled. 

 Addey asserts the argument that because natural characteristics
are defined by laws of heredity and natural characteristics are calculated by a
horoscope, it follows that the astrological code must be in agreement with the
genetic code. This point of view assumes that physiological transmission of natural
traits and cosmic transmission of natural traits are parallel expressions of
the same theme. To an astrologer, this argument is evident so it must be true. 

 Proving his point, Addey cites the research by Michel Gauquelin.
Earlier in 1970 Gauquelin had calculated the horoscopes for time of birth for
28,000 parents and children. He found a statistically significant tendency for
parents to have the same planet rising or culminating as their children. To
Addey, this astrological relationship of planetary position, though general,
does exist, allowing him to build upon its foundation.

 Addey acknowledges some research obstacles. An absence of data on
recorded birth times poses research problems for determining horoscopes. Addey
is less concerned about the modern medical practices such as induction of labor
and contraception that cause disoriented births.

 To substantiate his point, Addey provides personal data on his
paternal grandparents, his father, himself, and his three children because he
knew all of their exact birth times. Addey
also provides data on Queen Victoria, a hemophilia carrier, who passed on the
hereditary blood disease to one son and two daughters. Citing Harvey’s article, Addey claims that
the affected descendants with hemophilia repeat the Saturn and Mars/Saturn
midpoint by 45º aspect
(involving appropriate significators) and within extremely narrow orbs. As a
final example, Addey presents the case of Helen Keller, who acquired her
hearing and sight loss due to scarlet fever at age 19 months, rather than by
genetics. Through extensive computations for the 5th harmonic chart, putting
the radical chart on to a 72º dial,
or a fifth of the circle, Addey concludes that probably the only major
indication of perception deprivation on Keller’s horoscope is the fairly close square of Saturn, ruler of
the third house, to Mercury. The origin of severe injury to the faculties of
perception and communication by scarlet fever is found when the very harsh
opposition falls with Saturn on the radical Mars. Addey proves his point
through obfuscation, using terminology familiar only to astrologers, so the
reader has to either acquiesce or give up trying to understand the complicated
argument.

 Harvey, in a much shorter article, focuses on just the descent of
hemophilia from Queen Victoria. Harvey discovers highly specific astrological
correlates for the 24 hemophiliac and hemophilia-carrier descendants plus
non-hemophiliac siblings for whom data are known. Strikingly, the sensitive
point of Queen Victoria’s
horoscope with Saturn at 28º46’ Pisces and her Mars/Saturn
midpoint at 8º10’ Aries are duplicated in her
descendants who suffered from or were carriers of hemophilia by 45º aspect. Harvey concludes that
Saturn and the Mars/Saturn midpoint symbolize the hereditary deficiency of
hemophilia. He explains that Jupiter has traditional rulership of blood while
Sun/Jupiter is related the the regeneration of blood. Harvey also provides a
simplified cosmic and hereditary pedigree for Queen Victoria over 4
generations.

  The pamphlet provides no information about the two authors. John
Addey was born on June 15, 1920, at 8:15 AM GDT in Barnsley, England (53N34;
1W28). After the World War II, he joined the Astrological Lodge of the
Theosophical Society in England and continued his astrological studies while
pursuing a Masters degree. Addey founded the Astrological Association and
published several books on advanced modern harmonics and the symbolic basis of
numbers. Charles Harvey was born on June 22, 1940 at 9:16 AM BST in Little
Bookham, Surrey, England. Having Addey as a mentor, Harvey earned his Diploma
of Astrology in 1966 and became President of the Astrological Association in
1973. As an astrologer, teacher, organizer, author, researcher, and counselor,
Harvey specialized in financial astrology and the astrology of world affairs.
He died from non-Hodgkin’s
lymphatic cancer.

 Hemophilia is defined by Diane L. Cramer in the Dictionary of
Medical Astrology
(2000) as “malefics
in second-eighth axis, Mars Saturn stress aspect, Jupiter afflictions,
afflictions to Sun, Moon, or Ascendant.”
(p. 36). This definition is assumed to be self-explanatory as no further
information is provided. The four malefics are Mars, Saturn, Uranus, and
Neptune. A comparison of this dictionary definition of hemophilia to that
stated by Harvey was not attempted.

 More detailed astrological charts of Queen Victoria, Alexandra
the Czarina of Russia, and Czarevitch Alexei are readily available for
downloads from the Astro-Databank. The issues of privacy for personal and
astrological data are not addressed on these internet sites other than
statements that content is available under permission. Much of the personal
information on the European royalty is public knowledge, so their astrological
charts are easily computed.

 

Medical astrology never became enmeshed in modern medical care
even after John Addey proclaimed it would in 1976. Yet we can still speculate
on the changes if astrology were included in hemophilia care today. Hemophilia
treatment centers would now provide diagnostic, treatment, and forecasting
services. As part of the HTC social intake form, HTC staff would gather
detailed information on the exact date, time, and place of birth using GPS
coordinates. These same data would be collected on CDC surveillance forms and
processed by ATHN. In the beginning, these data would have been cumbersome, but
today computer software, and even smart phone apps, would simplify the
analysis. And to get the largest data set possible, the National Hemophilia Foundation
would initiate a program called My Stars, Our Future to determine the
astrological code of everyone with a bleeding disorder. We can always wish upon
a star.

1. The publisher Cambridge Circle is listed in the Notes with a Green Bay, Wisconsin address.

Presidents Who Know Hemophilia


You could say England is lucky: they have the best hemophilia publicity in the world. Their longest reigning monarch, Queen Victoria, had a son with hemophilia and so gave hemophilia a place in royal history, hence the “royal disease” nomenclature. And she exported hemophilia. Germany, Spain? Not a problem: hemophilia went straight to the royal families. Russia? The Crown Prince had hemophilia and while his life was cut short, he went down in history, as did hemophilia.

We’re not so lucky. The US has a publicity problem with hemophilia, not counting the Dark Ages when hemophilia was so closely linked to HIV. As it’s president’s day, it got me thinking: have any presidents known about hemophilia or known someone with hemophilia?

Prior to Ronald Regan, we don’t know. Regan seems to be the first to take notice of hemophilia, despite dire warnings from CDC in the early 1980s, when HIV was showing up in those with hemophilia. It took Regan’s Hollywood buddy Rock Hudson, who contracted HIV and stepped forward into the limelight in 1985, for Regan to finally take action on the nation’s blood supply and help stem the contamination.

Thanks to our great community activists, we wanted to keep hemophilia in the presidential eye, but it took a back seat once the HIV problem was controlled and recombinant products available.

Then came insurance problems. Big time. While campaigning, Obama, looking to connect on the insurance issue, was introduced personally to hemophilia through a Denver Town Meeting, where he made Nathan Wilkes–not just met him, Nathan introduced Obama to the televised Town Meeting! Nathan and Sonji Wilkes’ son Thomas has a high inhibitor and their medical bills were catastrophic. I know the WIlkes personally, and their story is incredible.

Apparently, Obama thought so too. He referred to the Wilkes family several times in the campaign. Obama is getting to know hemophilia. Just last summer, Obama had a photo op with HFA president Paul Brayshaw (hey, I know him too), in Paul’s back yard. Paul has fun telling about the secret service arrangements in preparing his humble abode for the arrival of the leader of the most powerful country on earth. Paul has hemophilia and Obama showed again support for our community.
Which presidential contender knows hemophilia? So we have Obama. Newt Gingrich actually does know hemophilia. He took up hemophilia as a study back in 2003-4, before the insurance crisis. Why? My good friend Dave Maderios, founder of Factor Foundation of America, hired Newt to examine hemophilia as a case study in chronic disease management and why the American system has it all wrong. And I got to spend a day with Dave and Newt, discussing issues regarding reimbursement. Newt was knowledgeable about hemophilia, reimbursement and had ideas on how to fix it.

It’s not looking too hopeful for Newt at this point, but should he get elected, he would be the first president to have in-depth knowledge of the hemophilia community. Mitt Romney, our former Massachusetts governor? I don’t know. He wasn’t in our state too often as governor! But as he launched the first mandated health insurance plan in the US in our state, something tells me he’d make a quick study of it all.

Publicity; I just keep praying that Brangelina’s next set of twins have hemophilia.

Happy president’s day!

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.

The Royal Disease Defined

You probably already know that hemophilia is referred to as the “royal disease.” It’s not, of course, but it was made famous by the royal families of Europe, some members of which had the blood disorder. Britain’s Queen Victoria is the world’s most famous carrier: she had nine children, but only son Leopold had the disorder.

Up till now, no one knew which type of hemophilia the royal line carried: A or B?

The results are in; the DNA results, that is. Britain’s Queen Victoria’s family had a severe form of hemophilia B. Our own University of Massachusetts’ Dr. Evgeny Rogaev has conducted DNA tests on the remains of the Romanovs, the queen’s Russian relatives. Victoria’s granddaughter Alexis married Nicholas II, the last Russian tsar. Rogaev examined the remains of Prince Alexei, himself, who had hemophilia, and who was killed with his entire family on Lenin’s orders.

This is one of history’s most fascinating stories: how hemophilia played a part in the overthrow of the Russian dynasty and perhaps led to the Communist take-over. Communism helped to define much of world history following World War I.

Read Nicolas and Alexandra, by Robert K. Massie, if you want a fascinating look at history that reads like a love story. This was also made into a spectacular movie. And for children, I offer my own book Alexis: The Prince Who Had Hemophilia, free of charge through my website. If you have hemophilia in your family, this is a story you must know!

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