Russia continues to be in the news daily, as it continues its war against Ukraine. Russia may go down in history for its heartless attack on Ukraine, but Russia also goes down in history for hemophilia. The most famous hemophilia carrier in history, Queen Victoria, is directly responsible for passing the gene along to her granddaughter, Alix, who in turn gave birth to a Russian baby with hemophilia—a baby who changed the course of world history.
This is why hemophilia is dubbed “The Royal Disease,” for its pedigree that started in Europe with Queen Victoria, and was shared with other European families as prince married princess and princess married prince.
Queen Victoria was a carrier of hemophilia B, and so then was her granddaughter Alix, who married Tsar Nicholas II of Russia. It was well known by then that hemophilia was running in the family.
Alix gave birth to Alexis (or Alexei), after already having four girls. The royal couple got their heir to the throne. But Alexis had hemophilia.
Alexis had no access to clotting factor of course; this was 1904, after all. The royal family came rely on a famous person of ill repute: Rasputin, the mad monk. He had a lascivious reputation but also a track record of helping people in pain, probably through hypnosis. Rasputin became ingratiated into the royal family and helped also to bring down the Russian monarchy. It’s been proposed that Nicholas II was so distracted by his son’s suffering due to hemophilia, that eventually he lost his grip on the monarchy at a time when the Bolshevik Revolution was poised to strike. And it did. It has been proposed that hemophilia changed the course of World War I, and changed the course of history. The Cold War, the Soviet Empire… all find their roots in the royal palace of the Tsar and a little boy with hemophilia.
The last Russian Royal family, including poor Alexis, was assassinated in a cellar in Siberia on July 16, 1918 by the Bolsheviks. There are many excellent books about the Romanovs, but my favorite is Nicholas and Alexandra, by Robert and Suzanne Massie, whose adult son had hemophilia (since cured by liver transplant). A 1971 epic British film was also made, based on the book. Review it here:Nicholas and Alexandra.
I have also written a book about this with illustrations, for young readers. Order Alexis: the Prince Who Had Hemophiliahere for your teen with hemophilia.
Suzanne Massie, who died a week ago at age 94, will always be our First Lady of hemophilia. Her passing is a significant, inevitable, yet still sorrowful. There’s hole in the world, in our community, where she once was. I fear though, that newer members of our community will not have heard of her, or the important impact she had. I want to ensure she is honored, as she should be. Besides Queen Victoria, who else could be our first lady, the first important mother of a child with hemophilia?
I first talked to Suzanne in May 1992, who was bursting with ideas for the two of us, including getting an official invitation to Russia for me. Hemophilia? Russia? How did all this come about?
It seemed predestined. On Christmas Day, 1986, my mother casually handed me a present she forgot to wrap: Peter the Great, by Pulitzer Prize winner Robert K. Massie. “His son has hemophilia; that’s why he writes about Russian history.” Massie had already published Nicolas and Alexandra, about the last Tsar of Russia whose son had hemophilia. I devoured the book, and Massie became my favorite author. Neither my mother nor I knew at the time I was newly pregnant; nine months later I delivered a beautiful baby—you guessed it, who had hemophilia. Even more weird, knowing it would be a long labor, I brought along my copy of Peter the Great to re-read, complete with yellow highlighter. The nurses teased me: What did I have, an exam the next day?
The next month, at our first clinic meeting, our nurse, Jocelyn, suggest I might like to read Journey, by Robert K. and Suzanne Massie. She asked if I knew Bob Massie, and I said yes, Peter the Great was my favorite book. And she said no, I meant the son, Bob. Of course I had never met him. It turned out he lived two miles from my house.
I then read Journey, which I believe is the first real book about hemophilia. It chronicled their life, and the birth of their son Bob who was born in 1958. I was in tears by page 11 and couldn’t read any further. Then unbelievably, Bob actually called me one frigid night in January 1988. He was the first person with him hemophilia I ever talked to in my life. He was so kind, so relaxed, and completely put my mind at ease. I was a new mom, with a lot of stress and debt, and a new baby with this obscure disorder. Bob, it would turn out, was just as amazing and kind as his mother.
Eventually I was able to meet his mother. I think I offered to use my database for my newsletter PEN to reach out to families with hemophilia to collect clothing and toys for Christmas for children in Saint Petersburg, Russia. Even I didn’t know the extent to which Suzanne Massie was so important. With the couple’s focus on Russian history, and Suzanne’s involvement in Russia, she actually became President Ronald Reagan’s adviser on Russia. You may have heard the phrase “Trust but verify.” This comes from a famous Russian phrase Doveryai, no proveryai. Suzanne offered the phrase to Reagan when dealing with Russians. Reagan like the phrase so much, it became a White House policy.
Our efforts worked: we received 800 lbs of clothing and toys for the kids in Saint Petersburg, All gifts from the US hemophilia community. I remember Suzanne visited me at the warehouse, where the boxes ended up, and turned and looked at me, still a young mom, and said “Look how much power you have.” I believe she felt proud of me. And Suzanne, who was 61 at the time, and I spent about four hours in that very cold U-Haul warehouse sorting and packaging up clothing and toys. I marveled at her drive, energy, and stamina. Yes, she became my hero.
Suzanne, surrounded by the St. Petersburg, Russia, children who received the gifts we collected
We spent more time together. In March 1993 I went to Suzanne’s house in Boston for our interview for my newsletter PEN. I recall how deeply she expressed love for the children. with hemophilia in Russia–who at that time had no access to factor.
In May 1993, I visited at her house again and we watched a 70-minute Russian documentary of her life. The Russians loved her. She had founded a nonprofit called the Firebird Foundation, which helped children with hemophilia in the Saint Petersburg area.
I also got to know Bob better, especially in September 1993, when we hosted him and his wife for dinner at our small home in Medford, as he discussed plans to run for Lt. Governor of Massachusetts. This family was amazing!
In 1997, I visited Russia for the first time, and in Saint Petersburg, I was able to meet Elyena, the nurse in whom Suzanne had entrusted the Firebird Foundation. Suzanne later asked me about the trip and asked, didn’t you feel like home when you arrived in Russia? Her love for that country was immeasurable.
Time went by, and with three children I was very busy. By then I had my business, and also had started Save One Life, a nonprofit dedicated to children with hemophilia in developing countries. We had a major fundraiser approaching in 2012, and it was my chance to dedicate the gala to Suzanne. We would honor her for her work for children in Russia and for being such an inspiration to all of us. I decided first to visit her in Maine where she lived now. It was a four and a half hour ride each way, in one day. But it was so well worth it. Suzanne was of course older, slowed down a bit, caring for her husband, but was in the process of writing a book about her years with Reagan. Of course she was!
Bob and his family, and also Bob’s sister Susanna, who I had met quite a few years before, and who has two sons with hemophilia, and all their children arrived for the gala held in Massachusetts. It was a wonderful event with a huge turnout. Suzanne is a great speaker, so knowledgeable, and yet connects with everybody. At the end of the event both she and her son Bob signed their books (Bob had a newly published book, A Song in the Night). And still, I felt that I could never do enough to praise this amazing woman who made such an impression on me, and gave me the confidence to continue my work, especially internationally. I could never fill her boots or take her place, but she was a constant inspiration in my life to help me fulfill my mission.
I read online that in 2021 she was awarded Russian citizenship. What a fitting tribute to such a dedicated woman. I will never forget her, and I have all her books in my library. I hope this generation of mothers can look to her for inspiration as well. Read her books; learn about her life. She’s living proof that one person can impact a global community.
Massie, Suzanne, Trust but Verify: Reagan, Russia and Me, Maine Authors Publishing, 2013: Paperback and Hardcover.
Massie, Suzanne, Land of the Firebird: The Beauty of Old Russia, Simon & Schuster 1980: Paperback; Touchstone 1982.
Massie, Suzanne, Pavlovsk: The Life of a Russian Palace, Little Brown & Co. 1990: Paperback; HeartTree Press 1999.
Massie, Suzanne, The Living Mirror, Doubleday & Co. Garden City New York 1972: Paperback: Anchor 1972.
Massie, Suzanne & Robert Massie, Journey, Alfred A. Knopf, New York 1975: Paperback: Warner’s 1976; Ballantine Books 1984.
Both the Royals and the Russians have been making the news this past year, not much of it good. For the Royals, it’s mostly just the Markles (on their “Privacy Tour”). For Russia…. well, let’s not go there.
While Russia is making a ruinous name for itself these past two years, it’s famous for its hemophilia history. Which originated from the English Royals.
We noted last week that it’s Bleeding Disorder Awareness Month, and we shared some popular myths about hemophilia. One was that hemophilia has been dubbed “The Royal Disease.” I shared in detail how this happened, and who it affected in my blog here.
But the most famous outcome of a genetic link in the English Royal family happened when Princess Alix, whose grandmother was Queen Victoria, a carrier of hemophilia B, married Tsar Nicholas II of Russia. Queen Victoria had nine children, of whom two were carriers (Alice and Beatrice) and one had hemophilia (Leopold). It was well known that hemophilia was now running in the family.
Alix, nicknamed “Sunny” by Nicolas, gave birth to Alexis (or Alexei), after already having four girls. They got their heir to the throne. But Alexis had hemophilia.
Alexis had no access to clotting factor of course; this was 1904, after all. The royal family came rely on a person of ill repute: Rasputin, the mad monk. He had a lascivious reputation but also a track record of helping people in pain, probably through hypnosis. Rasputin became ingratiated into the royal family and helped also to bring down the Russian monarchy. It’s been proposed that Nicholas II was so distracted by his son’s suffering due to hemophilia, that eventually he lost his grip on the monarchy at a time when the Bolshevik Revolution was poised to strike. And it did. It has been proposed that hemophilia changed the course of World War I, and changed the course of history. The Cold War, the Soviet Empire… all find their roots in the royal palace of the Tsar and a little boy with hemophilia.
The Queen is dead; long live the King! This phrase is being used around the world as England mourns the death of Queen Elizabeth II. Her eldest son Charles, once married to Diana, has been pronounced King Charles III.
Queen Elizabeth II’s death renewed my curiosity about why the current royals—Charles (now Charles III) and Diana, Princess Anne, Andrew and Edward—and all their assorted children and grandchildren, don’t have hemophilia? After all, both Elizabeth II and Prince Phillip, her husband, were both direct descendants of the most famous carrier of hemophilia in the world—Queen Victoria. They are third cousins.
Hemophilia became the “royal disease” with Queen Victoria. She was, until Queen Elizabeth II, who just passed away at age 96, surpassed her, the longest ruling monarch in history, at 63 years and 216 days. Queen Victoria, a known carrier of factor IX deficiency, also called hemophilia B, was Prince Phillip’s great-great-grandmother.
The Paternal Lineage
Prince Leopold
Prince Phillip was born a prince (unlike Diana, Camilla, Kate and Meghan, who married into the family). His mother, Princess Alice, was a great-granddaughter of Queen Victoria. Phillip was descended from the third child of Queen Victoria, also called Alice, who like her mother, was a carrier for factor IX deficiency, or hemophilia B. In fact, Queen Victoria had nine children, of whom two were carriers (Alice and Beatrice) and one had hemophilia (Leopold).
Alice married Louis IV, the Grand Duke of Hesse. Alice introduced hemophilia into the House of Hesse and this German lineage. There were seven Hesse children: one had hemophilia (Frederick) and two were carriers (Victoria, Phillip’s grandmother, and Alix). Alix married the Tsar of Russia, Nicholas II, and gave birth to Alexei (Alexis), who had hemophilia. So, Prince Phillip has a long and illustrious side to his family tree regarding hemophilia! It’s been proposed that Nicholas II was so distracted by his son’s suffering due to hemophilia, that eventually he lost his grip on the monarchy at a time when the Bolshevik Revolution was poised to strike. And it did strike.
Leopold, the only one of Queen Victoria’s nine children to have hemophilia, passed the carrier gene to his daughter Alice. Descendants of Victoria would married into the royal families of Russia, Spain, and Germany, and have children with hemophilia. And that’s where you get the moniker “Royal Disease.”
The Maternal Lineage
Queen Elizabeth’s side does not carry hemophilia. She is a direct descendant of King Edward VII, a son of Queen Victoria who did not have hemophilia. Phillip is her great-great-grandson but did not inherit hemophilia from his mother (not a carrier) or grandmother (also not a carrier but with a flip of the genetic coin might have been).
King Charles III, who does not have “The Royal Disease.”
Since Queen Elizabeth II had no hemophilia in her direct line, neither Charles nor his sons, William and Harry, have hemophilia or were ever at risk of inheriting it. We are happy none of them have hemophilia, but even if they did, with the excellent treatments we have today, it would not interfere much with their royal duties.
There as a time when I knew very little about the royals. I do recall in the 1980s playing the game Trivial Pursuit with friends, and pulling up the card that asked, “What disease is called the royal disease?” I knew the answer, but couldn’t recall why; did I read about Russian history? Or medical history? I don’t know; I just knew it. What I didn’t know is that a few years later I would give birth to a baby with hemophilia.
Our condolences to England for the loss of their lovely queen; and all best wishes to Charles as King Charles III.
Today, 89 years ago, Tsar Nicholas II of Russia and his entire family, including Alexis, the prince who had hemophilia, were assassinated in Siberia. This event shocked Russia and the world, and the elimination of the Tsar and the monarchy fueled a bloody civil war in which tens of millions of Russians died. The deaths of the Tsar, Empress Alexandra and their five young children have been the subject of many books and movies. One recent book is “The Kitchen Boy,” by Robert Alexander, which I just happened to read last night, not even aware that I was reading it on the eve of the anniversary.
The book is fiction, but draws on certain facts, and is narrated by the “kitchen boy” who served at Ipatiev House, where the royal family was imprisoned. As a servant, he had access to watch all that happened at the house, including the family’s death. He becomes close to the royals, and details their personalities, flaws, loving manner toward one another, and even their brutal deaths. The “kitchen boy,” now 94, lives in Illinois and wants to share some details he has never revealed before to his granddaughter. He records his memoirs, which becomes the narration of past events in the book. He eventually reveals who killed the Tsar and his family, and what became of the two missing bodies, believed to be Alexis and Anastasia (about whom there are also many movies and books). He reveals that actually Alexis and Maria were missing, and he tells how and why, and how that impacts his life, even now.
The book is easy to read–I read it in one sitting–and the language and style is a bit too easy. It reminded me of the kind of book we had to read for junior high over the summer. Interesting but light. You can almost believe the conversations and events took place, and I think that’s the best part of the book–the way Alexander makes the royal family come to life. But the book loses credibility towards the end. It tries to read like a da Vinci code a la Dan Brown, but it’s much too simplistic a plot for that. The plot takes a sudden radical twist at the end, which kind of left me head-scratching. I just didn’t get it.
Part of the ending included reference to someone with hemophilia (no spoilers) who had mild hemophilia, apparently had no manifestations of hemophilia his whole life, then got into a car accident, hit his head on the steering wheel and died at the scene. I am not a doctor, but this just didn’t sound accurate to me. There were plenty of accurate references to Alexis’s hemophilia, and how the poor boy suffered.
All in all, I would recommend this as a read, but don’t expect a great historical book or a great mystery. It’s light, not perfect, but a great summer beach book that can be read fast, and you may come away with a new appreciation of the Russian royal family. Hemophilia is a pervasive theme throughout the book, and plays a part in solving the mystery of what happened to the royals, and the two missing bodies. (Two stars out of four)
