Dispelling myths about bleeding disorders, including hemophilia
A columnist shares the truth behind 4 common misconceptions
Rare Disease Day, observed this year on Feb. 29, serves as a poignant reminder of the challenges facing those who live with uncommon medical conditions. According to the event’s website, a rare disease is defined as one that affects fewer than 1 in 2,000 individuals. Among these conditions is hemophilia, a disorder I’ve become more outspoken about in recent years.
In my efforts to shed light on hemophilia, I’ve engaged in enlightening conversations with my neighbors. Many of these conversations have necessitated dispelling prevalent misconceptions. Here I share some of the myths I’ve encountered and addressed:
‘Hemophilia affects only males’
This misconception is a prevalent one, as highlighted by an anecdote shared with me by a charming older man. He recounted the story of a family friend who battled hemophilia, contracted AIDS, and tragically passed away in his 50s. Despite having daughters, the family wasn’t initially alarmed because of the widespread belief that hemophilia exclusively affects men.
While it’s true that hemophilia primarily affects men because of its X-linked genetic nature, it’s essential to recognize that women also can play a significant role in its inheritance and may have low factor levels themselves. Women can inherit the gene mutation and become carriers, potentially experiencing symptoms. In some instances, carriers may have factor levels below the standard threshold of 40%, which is diagnostic of hemophilia. Moreover, in rare occurrences, women can indeed manifest hemophilia if they inherit two affected X chromosomes, one from each parent.
‘You must be related to royalty’
Queen Victoria of England was a carrier of hemophilia and passed it on to several of her children. One of her daughters, Princess Alice, passed the gene to some of her descendants, including members of the Russian royal family. That’s why hemophilia became known as the “royal disease” during the 19th and early 20th centuries.
However, it’s important to note that hemophilia can occur in any family, and most cases are not associated with royalty. Queen Victoria’s descendants spread the gene to various European royal families through marriage and inheritance, leading to several cases of hemophilia among European royalty in the late 19th and early 20th centuries. The connection between Queen Victoria and hemophilia played a significant role in understanding the disorder’s genetic basis.
‘If you get a paper cut, that must be bad’
While my blood does have difficulty clotting, most minor cuts don’t result in excessive bleeding for me. Such cuts may bleed longer than average, but they’re never life-threatening. The bigger problem is bleeding that I can’t see, including bleeding into a joint or the intestinal tract.
‘Hemophilia is always severe’
There are different levels of severity in hemophilia, depending on the amount of clotting factor present in the blood. Some individuals, like me, have mild hemophilia and experience bleeding episodes less frequently or with less severity compared with those with severe hemophilia.
However, women bleed differently from men. We’re challenged with monthly periods and childbirth, which often cause bleeding problems. A recent study showed that severe bleeding after childbirth was “alarmingly high” in women with hemophilia and other bleeding disorders, including von Willebrand disease.
By challenging these myths and disseminating accurate information, we can foster greater understanding and support for individuals navigating the complexities of hemophilia and other rare diseases. Through dialogue and education, we can forge a more inclusive and empathetic community that uplifts and advocates for those affected by rare conditions.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
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Comments
Sharon Henson
I should have known however I did not understand because I was told Hemophilia only affects males, which I had 3 brothers with it. I NOW KNOW WHY I bled and hemorrhaged during child birth AND when I had a vaginal hysterectomy plus so many instances in my adult life that led to bleeding, both resulting in blood transfusions. I never imagined that I had Hemophilia because I was not affected like my brothers were 2 severe and 1 not as severe. I did not have more than 1 birth in my life due to fear of having a child with Hemophilia, that birth was a male and he does not have the disease (Thank God). Does my son's daughter have to worry about passing on Hemophilia, she is not of marriage age yet. I do have cousins (my mother's sister has a son) with Hemophilia. I hope someone will answer this comment.
Jennifer Lynne
Hi Sharon! Thank you for reading and for adding to the conversation. Have you been diagnosed with hemophilia? If not, I suggest you have an evaluation by a hematologist at a federally funded treatment center. A hematologist is best to answer your question about your granddaughter having or passing along hemophilia. Situations like yours are exactly why I keep writing. Please advocate for your care and the answers you deserve. ❤️