Fascinating Facts About Hemophilia
All Hemophiliacs are Direct Descendants of Queen Victoria
While this makes a great tale – it’s just that – a tale. It’s true that Queen Victoria’s family has been famously documented as carriers of hemophilia, it’s an equal opportunity genetic disorder found in families of all races, creeds, and nationalities. Records as early as 1803 show that women outside the royal family had passed the disease to their sons, so the genetic component is not directly traceable to Queen Victoria – but it is a fun story to tell.
Let’s Back Up For A Second – What Exactly IS Hemophilia?
Hemophilia is a rare disorder that almost exclusively affects males, in which blood doesn’t clot normally because it lacks sufficient blood-clotting proteins. If you have hemophilia, you may bleed for a longer time after an injury than a person who does not have this condition. Small cuts are generally not too much of a problem – but severity varies – so care must be taken. Hemophilia is an “inherited” disorder – meaning that the disease is passed from parent to children via genes. About 1 in 5,000 males worldwide are born each year with the most common type of hemophilia, 20,000 are living with hemophilia in the United States alone.
Misconceptions Abound – Some are Pretty Wacky…
In Israel it is said that a person with hemophilia must be careful when giving their partner a rose, as they could prick their finger – and bleed to death. Across the world, in New Zealand, some believe that you can overcome the limitations of hemophilia participating in a physically demanding sports, while there are those that fear that hemophilia is caused by something bad one did during pregnancy. While interesting, these fictions are just that, fiction.
MYTH: If A Person With Hemophilia Gets a Cut, He Will Automatically Bleed to Death
FALSE: Truth is that if a person with hemophilia does not bleed any faster than those who do not have the disease – they simply bleed for a longer period of time, because they lack blood-clotting proteins. Small cuts or abrasions are usually not a cause for concern – and the usual antibiotic cream and Band-Aid will suffice in most cases. The real concern for serious bleeding is if muscles, joints, internal organs or deep tissues are injured – after any injury of this nature, contact your medical team.
MYTH: Hemophilia Can Be Outgrown – or Can Become Milder as a Person Ages
FALSE: This is sadly not true – as a genetic disorder, caused by lack of clotting proteins, hemophilia will never go away, as the lack of clotting factor is genetically “hardwired.” So what does this mean? The person will always have the same level of the disease and clotting factor deficiency. While research is being done using gene therapy – until it’s safe and effective – there is not cure for hemophilia.
MYTH: People With Hemophilia Cannot to Lead Normal Lives
FALSE: With proper treatment – especially employing preventive or prophylactic treatment into one’s system on a regular basis – a person with hemophilia can enjoy a normal, active lifestyle. Education and preparation are also key in case there is a bleed. Education allows for living a full, active, and healthy life – so make sure to talk to your healthcare team about making the best choices for you.
MYTH: Hemophilia Only Affects Males
This is almost true – the bleeding problems of hemophilia only affect boys, BUT rarely, girls can be “silent” symptomatic carriers, which means they can suffer mild bleeding symptoms as well. So how does a female get hemophilia? If a daughter is born to a father that has the disease, and a mother who is a carrier, then the daughter can inherit the more severe form of the disease – but this is extremely rare.
MYTH: If A Person Eats Certain Foods or Take Special Vitamins – Hemophilia Can Be Cured
FALSE: There is no food or supplement that can reverse the missing clotting factors that characterize hemophilia – no vitamin or diet can change this fact. The only thing that can “cure” a person with hemophilia is if they are given a medicine that contains the missing clotting proteins. So how did this myth get started? It’s possible that it got confused with the side effects of Vitamin K deficiency, which can cause similar bleeding problems – but is treatable with Vitamin K supplements.
MYTH: Patients With Hemophilia Always Have A Family History Of The Disease.
FALSE: It’s important to clear this misconception – the gene defect that is responsible for hemophilia has one of the highest rates of “spontaneous” mutations of any human genetic disorder! In fact, some scientists believe that as many as one-third of all cases of hemophilia are actually new mutations – meaning there is no inherited or family history of the disease. So yes – you are more likely to have hemophilia if you have a family history of the disorder – but it “ain’t necessarily so.”
