Hemophilia B
What does not kill me, makes me stronger - Friedrich Nietzsche
image by: The Coalition for Hemophilia B
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(Merry) Christmas Disease
So I was feeling a little lazy and thought I should find a disease related to Christmas, that way it’d be topical and I’d look like a genius. Well maybe not a genius, as all I did was type “Christmas” and “disease” into google and it returned “Christmas disease”. Don’t worry though, the disease itself is pretty cool!
Unfortunately for me my attempt at topical blogging reveals that Christmas disease is not named after the holiday but instead after Mr Stephen Christmas, a British migrant who immigrated to Canada, who was diagnosed at the age of 2 in 1949 with haemophilia. On a return visit to England in 1952 Stephen was again hospitalised and a sample of his blood was sent away to the…
Resources
Hemophilia in the ED
I think that we would all agree that “bleeding” as the chief complaint catches your attention in the Peds ED (or any ED for that matter).
Case Closed: Famous Royals Suffered From Hemophilia
Based on the symptoms, modern researchers concluded that the royals suffered from hemophilia--a genetic disease that prevents blood from clotting--but there was never any concrete evidence. Now, new DNA analysis on the bones of the last Russian royal family, the Romanovs, indicates the Royal disease was indeed hemophilia, a rare subtype known as hemophilia B.
Hope for Hemophiliacs: Gene Therapy Can Stop the Bleeding
Hemophilia B may be "the first well-known disease to appear treatable by gene therapy, a technique with a 20-year record of almost unbroken failure."
Mountaineer and Hemophiliac Chris Bombardier to Conquer Highest Summit on Each Continent
During infancy, Bombardier was diagnosed with severe Hemophilia B, also known as Christmas disease or factor IX (FIX) deficiency. Hemophilia B can be a life threatening blood disorder where the FIX clotting protein malfunctions or is missing all together.
Queen Victoria's curse: New DNA evidence solves medical and murder mysteries
Queen Victoria and many of her descendants carried what was once called "Royal disease"—now known as hemophilia, a blood clotting disorder. But it has remained unknown precisely what variety of the disease afflicted the family and how many deceased relatives may have had the inherited disease.
(Merry) Christmas Disease
So I was feeling a little lazy and thought I should find a disease related to Christmas, that way it’d be topical and I’d look like a genius. Well maybe not a genius, as all I did was type “Christmas” and “disease” into google and it returned “Christmas disease”. Don’t worry though, the disease itself is pretty cool!
The Coalition for Hemophilia B
Mission...To make quality of life the focal point of treatment for individuals with hemophilia in the 21st century.
Haemophilia News
Excellent resource on late breaking news.
Hemophilia News Today
Hemophilia News Today is a digital platform providing daily updates on research, science and advice news for Hemophilia patients and caregivers.
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