Terminology can hide the severity of a disorder, especially for women

The recent Rare Blood Disease Summit sponsored by Genentech highlighted a critical perspective pertinent to me: “Mild is the most dangerous word in hemophilia.” I wholeheartedly agree with this statement as a person with mild hemophilia B and von Willebrand disease.

Mild hemophilia is distinguished by relatively higher clotting-factor activity when compared with moderate or severe hemophilia. In cases of severe hemophilia, patients often employ prophylactic treatment strategies to elevate their clotting factor levels up to 100%, essentially providing a protective shield against bleeding episodes. But prophylactic treatment is rarely attainable for those grappling with mild hemophilia.

We typically live with factor levels hovering at 40% or lower, necessitating vigilance and tailored management to address the inherent challenges posed by our condition.

The word ‘mild’ is dangerous When I bleed as a complication of an injury or medical procedure, there’s nothing mild about the experience. My condition’s severity becomes painfully evident.

I vividly remember the moment a surgeon, with a mix of relief and astonishment, told me I was “lucky to be alive” after the intense bleeding complications I faced during surgery. At that moment, my hemophilia struggles were far from mild. The battle I fought against iron deficiency and anemia further emphasized that my bleeding was anything but mild.

These incidents underscored my condition’s profound impact on my life, regardless of its classification.

The danger in the word “mild” lies in the misconceptions it can create. Those of us with mild disorders might not experience severe bleeding episodes regularly, but we still require careful management and support. Without proper education and awareness, we risk overlooking our hemophilia symptoms or underestimating the need to seek medical attention.

Women with mild hemophilia

Mild hemophilia disproportionately affects women, whose symptoms are often dismissed or attributed to other causes. Many face challenges in getting timely diagnoses of hemophilia and accessing appropriate care. For them, the term “mild” can be misleading and potentially dangerous. It might downplay the seriousness of their condition, leading to inadequate hemophilia treatment and a lack of understanding from both healthcare providers and society at large.

Raising awareness about the diverse ways bleeding disorders can manifest, especially in women, is crucial. It’s not about just acknowledging the physical aspects, but also addressing the psychological and social effects these disorders can have on individuals and their families.

To ensure the well-being of everyone with bleeding disorders, we need to redefine our understanding of the “mild” classification. We must emphasize the importance of personalized, comprehensive care, regardless of the condition’s severity. By doing so, we can create a healthcare environment where everyone, regardless of how their disorder is classified, receives the attention, understanding, and support they need to live healthy and fulfilling lives.