The Royal Family
Hemophilia is sometimes known as the “Royal Disease” because through Queen Victoria, the disease was passed to many families of European royalty. Queen Victoria likely carried the gene from a genetic mutation, as there were no known carriers before her. Because the last known hemophilic descendant of Queen Victoria died in the 1940s, only in 2009 did tests on the remains of the Romanov family reveal that she likely had hemophilia B.
Hemophilia is sometimes known as the “Royal Disease” because through Queen Victoria, the disease was passed to many families of European royalty. Queen Victoria likely carried the gene from a genetic mutation, as there were no known carriers before her. Because the last known hemophilic descendant of Queen Victoria died in the 1940s, only in 2009 did tests on the remains of the Romanov family reveal that she likely had hemophilia B.
Queen Victoria’s son Leopold was hemophilic, and her daughters Alice and Beatrice were carriers. Alice’s son Frederick had hemophilia and her daughters Irene and Alexandra/Alix were carriers, introducing the mutation to the Prussian and Russian royal families respectively. Of Beatrice’s children, Leopold and Maurice were hemophilic; her daughter Victoria Eugenie was a carrier and introduced the disorder to the royal family of Spain. Through various other connections, hemophilia also affected royalty in Germany.
Perhaps the most well-known hemophilic member of royalty is Tsarevich Alexei, youngest member of the Romanov family, who had frequent bleeding episodes and whose debilitating disorder may have been involved in taking down Imperial Russia. His mother was Alexandra Fedorovna who was known as Alix of Hess and by Rhine before marrying Nicholas II, the last tsar of the Russian Empire. Alexandra was Queen Victoria’s granddaughter; her and her mother Alice are now known carriers of affected X chromosomes. The family attempted to keep Alexei’s disorder under wraps, as he was the only male heir, and consulted a religious ‘healer’ named Grigori Rasputin for treatment. He became a trusted friend and ‘mythical advisor’ to the family. Other politicians may have used Rasputin’s association with the family to discredit them and help bring down the Russian Empire. Alexandra, in particular, always came to Rasputin’s defence when other government officials warned them about the “mad monk” and this significantly lowered her popularity amongst citizens. Rasputin became very familiar with the imperial family and was known to be a rowdy character and perhaps charlatan, though the family kept him around due to Alexei’s hemophilia. In the end, however, imperial Russia fell and 13 year old Alexei, along with his immediate family, were murdered.
Perhaps the most well-known hemophilic member of royalty is Tsarevich Alexei, youngest member of the Romanov family, who had frequent bleeding episodes and whose debilitating disorder may have been involved in taking down Imperial Russia. His mother was Alexandra Fedorovna who was known as Alix of Hess and by Rhine before marrying Nicholas II, the last tsar of the Russian Empire. Alexandra was Queen Victoria’s granddaughter; her and her mother Alice are now known carriers of affected X chromosomes. The family attempted to keep Alexei’s disorder under wraps, as he was the only male heir, and consulted a religious ‘healer’ named Grigori Rasputin for treatment. He became a trusted friend and ‘mythical advisor’ to the family. Other politicians may have used Rasputin’s association with the family to discredit them and help bring down the Russian Empire. Alexandra, in particular, always came to Rasputin’s defence when other government officials warned them about the “mad monk” and this significantly lowered her popularity amongst citizens. Rasputin became very familiar with the imperial family and was known to be a rowdy character and perhaps charlatan, though the family kept him around due to Alexei’s hemophilia. In the end, however, imperial Russia fell and 13 year old Alexei, along with his immediate family, were murdered.
Other
- Because most hemophiliacs rely on blood donations for their blood transfusions and blood & plasma donations were not screened in the 1980s, more than 80% of people with severe hemophilia at that time became infected with AIDs
- Approximately 75% of hemophiliacs around the world still do not receive adequate treatment