When I have the opportunity to gather with my brothers and sisters from the hemophilia community, I notice we all have stories to tell. When you live with a rare disease, you are bound to have unique interactions with medical providers, family members, friends, and colleagues. These interactions range from touching to absurd.
I never cease to be amazed by the alarming amount of misconceptions about hemophilia. Following are a few of the mistaken beliefs I hear regularly, some even from medical professionals!
Myth #1: A person with hemophilia can bleed to death from a small cut.
While I have heard many people talk about those with hemophilia getting paper cuts, I have yet to hear of someone suffering severe blood loss as a result. People with hemophilia bleed longer, not faster, and they have strategies on hand to help their blood clot. Sometimes they need to take medicine and infuse a factor their blood is missing. Sometimes applying ice and pressure will stop the bleeding.
Myth #2: Only boys get hemophilia.
Because the mutations that cause hemophilia are on the X chromosome, many people believed (and sadly, countless people still believe) that women can’t get hemophilia. However, a process called lyonization, or X-inactivation, can indeed cause hemophilia to manifest in girls.
Duplicate X chromosomes are unnecessary, so half of a woman’s X chromosomes turn off randomly in utero. Ideally, more of the chromosomes without hemophilia would stay on — or at least 50% of the good ones would. However, lyonization is random, and some women will have extreme lyonization, in which their X chromosomes with the hemophilia mutation are the ones that stay on. In this case, they will have hemophilia.
This is much more common than once thought. Both my sister and I have mild hemophilia. Medical professionals often need to be educated about X-inactivation as it relates to hemophilia.
Myth #3: Only women carry hemophilia and can pass it on.
This is a myth perpetuated by outdated terminology that said men have hemophilia and women could only be “carriers.” This caused many to believe that only women passed hemophilia on.
Women can pass a hemophilia mutation on to their sons or daughters. A man with hemophilia will pass the mutation to all of his daughters (but not his sons, as it is on his X chromosome).
Myth #4: People with hemophilia are fragile and cannot be active.
This is far from reality! There are amazing athletes with hemophilia. Chris Bombardier climbed the seven highest summits in the world; Barry Haarde was an avid cyclist who raised money with his rides. While it may not be recommended by physicians, I personally know people with hemophilia who have played football, basketball, and baseball. Participation in contact or extreme sports means a need for clear safety protocols. It has been done.
(Before engaging in any contact sport, contact your provider to make sure it is safe for you. Often, athletes will infuse factor products immediately before a game to afford themselves maximum protection from bleeds caused by a sports injury.)
These are just a handful of the many myths about hemophilia that abound in our community. Combating the myths with education is critical for the well-being of our sisters and brothers with hemophilia. What myths have you personally encountered? Please share your story in the comments below!
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?