The Royal Disease

By Justin Lindhorst and Maria Santucci Vetter


For the first time in more than 70 years, the British monarchy crowned a new king. Prince Charles takes the place of his mother, Queen Elizabeth, who passed away at age 96 on September 8th, 2022. With Prince Charles’ crowning ceremony taking place last May, we thought this would be a great time to revisit the Royal Family and how it was affected by hemophilia.


Queen Victoria

Until the reign of modern-day Queen Elizabeth, Queen Victoria had the longest reign of any female monarch in history. Her sovereignty entered a time that saw progress and growth in nearly every aspect of society. From industry and science to culture and politics, her rule ushered in an era that would later bear her name, Victoria. Taking the throne at age of eighteen and ruling for sixty-four years, Queen Victoria is perhaps one of the most iconic figures in the history of the British monarchy.

Under Victoria, the British Empire rose to become a leading global power. One way the monarchy sought to secure political alliances came through strategic marriages between the ruling royal families. Queen Victoria became known as The Grandmother of Europe as some of her nine children and 42 grandchildren married into royal families across the continent. It was through these marriages that Victoria not only secured political clout, but such practice was also the cause for the passing of a condition the royal monarchy often tried to hide, hemophilia. As carrier of hemophilia, Queen Victoria inadvertently spread the condition from the United Kingdom to the royal houses of Germany, Spain, and Russia. The line of princes with hemophilia in Europe led to the bleeding disorder being coined as The Royal Disease.

Though they lived lavish courtly lifestyles, life for Victoria’s descendants with hemophilia was not easy. At a time when doctors knew little about the condition, there was not much a family could do for their affected children. Though great care was taken to protect the princes, unfortunately, many did not live to see adulthood. The following is an account of The Royal Disease as found in some of the major ruling monarchies of Europe.


The United Kingdom

Prince Leopold, Duke of Albany

Leopold, Victoria’s eighth of nine children, was born at Buckingham Palace. Of four sons, he was the only one with hemophilia. The condition caused Victoria much anxiety, prompting her to keep the prince close to her side. He was followed in permanent attendance by several physicians. Victoria thought it was unnecessary for him to leave the home and even encouraged him not to marry or have children.

Unable to pursue a military career because of his condition, Leopold enrolled in the Christ Church, Oxford University, where he studied a wide variety of subjects. He earned an honorary law degree and became a patron of the arts and literature while serving as his mother’s unofficial secretary.

Despite his mother’s wishes, Leopold sought marriage and considered it his only hope for independence. His health condition caused some difficulty in finding a wife. After several rejections, Leopold eventually married Princess Helen of Waldeck and Pyrmont, a member of the German royal family. Though their marriage was brief, the couple was happy and gave birth to a daughter, Alice, Countess of Athlone, and a son, Charles Edward.

Due to joint pain associated with his hemophilia, the winter months were always difficult for Prince Leopold. In February 1884, while his wife was pregnant with their son, Leopold was encouraged by his physician to spend time in the warmer climate of Cannes, France. Just weeks later, while in Cannes, Prince Leopold suffered a fall, injuring his knee and hitting his head. He passed away early the next morning from a combination of a cerebral hemorrhage and a fatal mixture of pain medications.

Prince Rupert of Teck

Prince Rupert was the son of Prince Leopold’s daughter, Princess Alice, Countess of Athlone. Like his grandfather, he had hemophilia. Rupert was a serious and studious young man and attended Eton and Trinity Colleges at Cambridge University. While traveling in Bellevue-sur-Saone, France, Rupert was in a car accident where he suffered a slight skull fracture. Prince Rupert passed away five days later, just a few days before his 21st birthday.

Hemophilia in the royal family did not end with the princes most closely tied to the British Royal Family. Queen Victoria passed the hemophilia gene to two of her four daughters, both of whom gave birth to sons with the bleeding disorder, and one also had two daughters who were carriers.


Germany

Hemophilia found its way to the German Empire with the marriages of Queen Victoria’s daughters, Princess Beatrice of Battenberg and Princess Alice, Grand Duchess, to German suitors. Beatrice had two boys with the condition, Leopold and Maurice. Princess Alice had six children, including one son, Prince Frederick, with hemophilia and two daughters, Princess Irene and Princess Alice, who were carriers of hemophilia. Irene would go on to have two affected sons, Prince Waldemar and Prince Henry.

Prince Leopold Mountbatten

Lord Leopold is the son of Princess Beatrice and Prince Henry of Battenberg. He served in the King’s Royal Rifle Corps, where he attained the rank of Major. Leopold was also a member of the Knights of the Royal Victorian Order and the Knights Grand Cross of the Royal Victorian Order. At age 32, due to repeated bleeding episodes into his hip, Lord Leopold required surgery and passed away during the procedure.

Prince Maurice of Battenberg

Prince Maurice, Leopold’s brother and the youngest son of Beatrice and Henry, was educated at Lockers Park Prep School. He went on to attend the well-known Wellington College. Like his brother, Maurice volunteered in the King’s Royal Rifle Corps. As a Knight Commander of the Royal Victorian Order and a Lieutenant in the rifle corps, Maurice bravely served in World War I. At age 23, he was mortally wounded at the First Battle of Ypres in 1914 and died on the battlefield.

Prince Friedrich of Hesse

Prince Friedrich was born to Princess Alice, daughter of Queen Victoria. Grandson of the queen, Friedrich or ‘Frittie’ as the family often called him, was an active, cheerful child. He was diagnosed with hemophilia in February of 1873 after a cut on his ear bled for three days. Three months later while playing with his younger brother, Frittie climbed onto a chair in his mother’s bedroom to get a better view from a window. After accidentally tipping the chair, he fell through the window. Though he survived the twenty-foot drop, he died hours later from a brain hemorrhage at the tender age of two. Princess Alice never recovered from her loss.

Prince Waldemar of Prussia

Princess Irene of Hess, the daughter of Princess Alice, Grand Duchess, had three children. The oldest and youngest were diagnosed with hemophilia. The family was devastated the “Royal Disease” had shown up in the ruling Prussian family with the birth of their first son, Prince Waldemar of Prussia. Although the condition caused Irene much anxiety, Prince Waldemar lived into his fifties, unlike many of his relatives. He married Princess Calixta of Lippe-Biesterfeld in August 1919, and even though they had a happy marriage, they decided against having children.

Waldemar lived to see a time when treatment for hemophilia saw some improvement. Doctors discovered that an infusion of blood from a healthy patient could help stop the bleeding in people with hemophilia. As such, Waldemar received blood transfusions to control his bleeding episodes. During World War II, he and his wife fled the Russian advance and arrived injured and exhausted in Tutzing, Bavaria, where Waldemar received his last blood transfusion. Not long after arriving in the city, the American Army took control of the area and sent all available medical resources to treat the concentration camp victims. At a medical clinic, but without access to blood transfusions, Waldemar bled internally and passed away.

Prince Heinrich of Prussia

Also born to Princess Irene of Hesse, Prince Heinrich was the youngest brother of Prince Waldemar, and also diagnosed with hemophilia. Heinrich climbed up on a table and fell. Although the fall itself was not all that far, the young boy had fallen headfirst. Just four years old, Heinrich died the following day from the resulting brain hemorrhage. The entire family was shattered.


Russia

Princess Alice, Grand Duchess, had another daughter, Alexandra of Hesse, who married Tsar Nicholas II Romanov of Russia. They would go on to have five children – one of whom would come to be considered the most famous of all the royals affected by hemophilia. Tsarevich Nikolaevich Alexei of Russia was the great-grandson of Queen Victoria.

Tsarevich Nikolaevich Alexei

After having four daughters, it was an extremely joyous occasion for the Romanovs when Alexei was born. Being the first son, Alexei was in line to become the next Tsar and leader of the Russian Empire. As the only male heir to the throne, the family was distraught when after the umbilical cord was cut, his navel continued to bleed for hours, indicating the young prince had hemophilia.

Alexei was very spoiled, prone to mischief, had a temper and was often difficult to control. An extremely active child, he was prohibited from playing too roughly and from activities as riding a bike, playing tennis or horseback riding. He was lonely but for his sisters as he wasn’t often allowed to play with other children. Two Imperial Navy sailors were appointed to watch over and keep him out of trouble, but they were not always able to do so.

As the center of attention in his family, when Alexei felt well, the entire house was happy. When he suffered a bleeding episode, everyone suffered with him. He was prone to spending weeks in bed in severe pain and had suffered many near-death bleeding episodes. Yet, Alexei grew to become a much better-behaved, good-natured, considerate and sensitive young teen.

So severe was Alexei’s hemophilia, Alexandra and Nicholas devoted much of their time and energy to seeing that he was taken care of. They came to rely on the services of Grigori Rasputin, a Russian mystic and self-proclaimed holy man, who was able to help Alexei through his painful bleeding episodes. No one knows exactly how Rasputin was able to mend the young Tsarevich’s bleeding episodes. It is speculated he prevented physicians and caretakers from manipulating Alexei’s body too much and used a combination of hypnosis, herbs, or as some believed, “supernatural healing powers” to ease the boy’s pain.

Alexei’s hemophilia often took his parent’s attention away from governing. Their reliance and close connections with Rasputin spurred much gossip and discontent. The country was already plagued with political and social unrest. A series of bloody revolutions took place that would ultimately put the communist Bolsheviks in power. Arrested in the Russian Revolution of 1917, Alexei and his family were forced to live as captives.

In July of 1918, the family was tragically and systematically executed by the Bolsheviks to ensure a counter-revolution could not rally around the former rulers of Russia. Alexei and his family were eventually canonized as “passion bearers” in the Russian Orthodox Church Abroad. 

The remains of Alexei and one of his sisters, believed to be Maria (although it might have been Anastasia), were discovered in 2007. DNA tests conducted in 2009 revealed that in addition to confirming the factor IX deficiency diagnosis, Maria was a carrier. This correlates with a report that at 15-years old, Maria bled excessively when having her tonsils removed. It is unknown if any of the other sisters were carriers since their remains were incinerated.


Spain

Hemophilia would find its way into the ruling royal Spanish family by Victoria Eugenie of Battenberg, the daughter of Princess Beatrice and granddaughter of Queen Victoria. Victoria Eugenie became the Queen of Spain when she married King Alfonso XIII. Including the heir to the throne, two of their seven children were diagnosed with hemophilia. It was reported that the marriage was unhappy with the king never forgiving his wife for bringing hemophilia into the royal bloodline, and they later separated.

Alfonso, Prince of Asturias

Queen Victoria’s great grandson, Alfonso was born to Victoria Eugenie of Battenberg and her husband King Alfonso XIII. As their first-born son, Alfonso was the heir-apparent to the throne of Spain. It was discovered he had hemophilia at the time of his circumcision. Alfonso and his younger brother, Infante Gonzalo, were fitted with special jackets that were made to help prevent bleeding episodes.

Political upheaval left the Spanish monarchy largely defunct as the country moved to become a republic and in 1931, the monarchy was abolished. In 1933, Alfonso renounced his right to the defunct throne to marry a Cuban commoner having met her at a hospital in Switzerland where he was being treated for his hemophilia. He would later divorce, marry another commoner and divorce again. Alfonso did not have children with either wife.

At age 31, while being driven by a friend in Miami, Florida, the car swerved to avoid a truck and crashed into a telephone booth. Although his injuries were thought to be minor at the time, he suffered fatal internal bleeding and passed away. Initially buried in Miami, Alfonso was re-entombed in 1995 at The Pantheon of the Princes in El Escorial, Spain.

Infante Gonzalo of Spain

Another great-grandson of Queen Victoria, Infante Gonzalo was the youngest child of King Alfonso and Queen Eugenie. The final name in his title included “Mauricio” in honor of Prince Mauricio, his uncle with hemophilia who had been killed in World War I. During his life, it was not widely known that Gonzalo had hemophilia. Though he suffered hemophilia-related health issues, he was an avid sportsman, attended the Catholic University of Leuven to study engineering and held rank as a private in the Spanish Army.

In 1934 while spending the summer holiday in Austria with family, Gonzalo was out for a ride with his sister. To avoid hitting a cyclist, his sister swerved and crashed into a wall. Like his brother, Alfonso, who would perish in a car accident four years later, Gonzalo suffered no visible injuries right after the accident; however, hours later, it was discovered he was experiencing a severe abdominal bleed. Gonzalo passed away just two days later at age 19.


One day, Olga, Tsarevich Alexei’s sister, found the ten-year old prince gazing up at the sky. When she asked what he was doing, he replied, “I like to think and wonder…I enjoy the sun and the beauty of summer as long as I can. Who knows whether one of these days I shall be prevented from doing it.” The royal princes born with The Royal Disease” faced struggles largely unknown to our bleeding disorders community today.

Though the ruling monarchies of Europe often attempted to minimize the appearance of hemophilia in their families to the public, privately, great measures were taken to learn about and treat the bleeding disorder. They commissioned the finest physicians of the time to attend to their children. Increased attention from doctors brought about awareness and new literature regarding hemophilia.

The late 1800s saw a huge increase in the number of publications focused on hemophilia, shedding light and paving the way for future physicians to advance treatment. Though their struggles were great, the status of the princes with hemophilia helped drive research and bring attention to The Royal Disease. Since the death of Prince Alfonso in 1938, there remain no living descendants with hemophilia or known carriers in the royal family.

It is speculated that treatment for hemophilia would not have advanced as quickly were it not for the royal princes who suffered from the condition. Their stories are compelling and prompt us, as young Alexei, to think and wonder…


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DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.


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