This-Abled Dad

An Instructional Manual for Your Hemophiliac: Busting Common Myths and Misconceptions

Hemophilia is a very rare genetic disorder, occuring in only 1 of 5000 male births for hemophilia A. Hemophilia B on the other hand occurs in 1 of 25000 male births. Since it’s so rare, we’re susceptible to form misunderstanings of it. There are a variety of common myths and misconceptions regarding the illness. Below is a list of common misconceptions accompanied by facts to help further your understanding of the bleeding disorder.

Small cuts and bruises are life-threatening.

It’s the first thing that comes to the minds of people when I share that I have hemophilia. Having hemophilia does not mean that we bleed profusely—rather, we bleed for longer periods of time. So blood loss is not really a huge threat. Cuts and scars can easily be treated with basic first aid. So it’s a wild misconception that hemophiliacs should avoid handling scissors and sharp objects. It’s normal for hemophiliacs to use such objects since it’s only as much a threat to them as it is for people without the affliction.

You need to have a family history of hemophilia.

Hemophilia is a genetic disorder, as such, We expect that hemophiliacs have a family history of the disorder. This is, however, not always the case. Over 1/3 of all hemophiliacs acquire it due to a genetic mutation in the mother’s genes. In my case, for example, my hemophilia B is a result of a genetic mutation, which means we don’t have any history of hemophilia in the family. A lot of hemophiliacs also remain undiagnosed since some exhibit only very mild symptoms that they’re often not aware they have hemophilia—unless they have major surgery that may cause severe prolonged bleeding. There’s even the funny misconception that all hemophiliacs come from royalty. Given the nature of the illness, however, this is simply not the case.

There’s only a single type of hemophilia.

We can break hemophilia down into 4 common types. There’s the common variations, Hemophilia A and Hemophilia B. There’s also the more infrequent Hemophilia C and Von Willebrand Disease. Hemophilia A, often considered the classic type of hemophilia, is a deficiency in the body’s Factor VIII levels. It is also the most common, and severe type of hemophilia. Hemophilia B, also known as Christmas Disease is a deficiency in clotting Factor IX. Hemophilia B is much rarer occuring four times less than Hemophilia A.. The latter two types are considered less severe variations of the disease—and may affect both men and women. Patients diagnosed with Hemophilia C or Von Willebrand Disease (VWD) lack blood proteins Factor XI and Von Willebrand Factor (VWF), respectively, Bleeding is also less severe and more uncommon—often subcutaneous and occuring in areas with soft tissue.

Among the types of hemophilia, they also vary in severity. Depending on the levels of clotting factor activity in their bodies, they can be mild (50%-150% factor activity), moderate (5%-40%) or severe (less than 1%). In addition, according to more recent clinic studies, Hemophilia A often exhibits more severe symptoms compared to other variations of the disorder. Hemophilia B follows, with its severe manifestations often exhibiting the same symptoms as moderate Hemophilia A.

Hemophiliacs can’t play sports.

It’s a common and very unfortunate misconception that hemophiliacs should stay away from physical activities.  Sports and physical activities, in general are, in fact, more essential for hemophiliacs than those not suffering from the disease. Sports and exercise help strengthen muscles and improve overall joint health. Possessing better physical fitness can drastically reduce bleeding episodes and often makes them milder. Engaging in sports also raises endorphin levels aiding hemophiliacs in pain management and tolerance.

Hemophilia can only affect boys.

Hemophilia is an X-linked genetic disorder—meaning the deficiency manifests in the X-chromosome, which is more dominant in men than women. VWD affects women more often. Diagnoses for Von Willebrand often occurs in women due to prolonged menstrual bleeding. Many men suffering from Von Willebrand remain undiagnosed, until they suffer from major trauma or surgery. There are very rare instances that women are diagnosed with hemophilia A, B or C. This often occurs when the patient acquires a deficient x-chromosome, while its accompanying x-chromose suffers from a mutation—resulting in hemophilia. Women often exhibit milder symptoms than their male counterparts. Women with a single flawed chromosome, on the other hand, sometimes exhibit very mild symptoms of hemophilia as well—they are considered as symptomatic carriers

Health minotiring programs in the United States have listed over 2700 women diagnosed with Hemophilia A and B in their local Hemophilia Treatment Centers (HTCs). In the Philippines, however, they are practically unheard of.

Hemophilia is still very misunderstood. It’s helpful to stay educated so you are more knowledgeable about their conditions. Being more aware of simple facts about hemophilia can lower the occurrence of medical gaslighting. It also helps us bust the myth that hemophiliacs, and other disordered individuals are incapable, dispensable and, I dare say, “other”. And it also helps us with diagnosing possible hemophiliacs early.

 

Leave a Comment

Your email address will not be published.