Mild is the most dangerous word in the classification of hemophilia

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

Jennifer Lynne avatar

by Jennifer Lynne |

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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.

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An illustration shows a person reclining on a couch while experiencing joint pain in the knee.

Joint impairments linked to functional decline in mild hemophilia

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.

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.


David Mountfort avatar

David Mountfort

As a parent with two sons with "mild" Haemophilia B, I couldn't agree more. Bleeding episodes are rare, but severe when they happen and I've done the hospital run enough times to understand. Once a young and very inexperienced junior doctor was insisting on sending us home late at night. In the end I let her try to get our son onto crutches, knowing what was going to come next. He duly screamed, she got the point and was admitted to the ward. Emergency room doctors often don't understand it either, and I've found it essential to insist that they ring the duty Haematologist. Another misunderstanding is because often there is no sign of blood as it is an internal bleed into a joint or muscle. The pain is severe, and on nearly every occasion the child has been admitted to the ward for Factor 9 transfusions and kept there for up to 10 days while the haematoma heals.

Jennifer Lynne avatar

Jennifer Lynne

Thank you, David - I am so glad you commented. The misunderstanding of "mild" hemophilia is very real and scary. I try to avoid ER's at all costs. I have been told so many times, "I don't think you're bleeding - I don't see blood," when I know I am having an internal bleed. Your sons are lucky to have you as an advocate.

Frances Rothwell avatar

Frances Rothwell

I have "mild" haemophila. I have a piched nerve in my spine, which is very npaimful. I also have AMD. My husbaaand had a stroke in 2015. What I don't understand that when he came out of hospital, he could speak. Now he can't.Sso He seems to be going backwards! The last time it was measurerdmy factor ix was 28%. So, he can't speak and I can't see. Doesn;t make for good anything! My father had severe haemophilia.

Jennifer Lynne avatar

Jennifer Lynne

Thank you, Frances - I am so sorry for your struggles. I hope you are receiving proper care. ❤️

Priscilla Oren avatar

Priscilla Oren

i have survived 75 years as a carrier of Factor 8 and also a mild Factor 8 with a level in the 20% for the majority of my life. I almost died twice from bleeding the first one being a tonsillectomy at age 5. Like most mild hemophiliacs my late diagnosis meant no treatment and a lot of joint micro bleeds which cripple me now. There have been times that I wanted to die from the pain.

Jennifer Lynne avatar

Jennifer Lynne

Hi Priscilla! I am sure you have some stories, you have lived through some trying times in the hemophilia community. A tonsillectomy in the '70s was how I was diagnosed. I am so very sorry for your pain - I hope you receive proper treatment now.

Frances Rothwell8 avatar

Frances Rothwell8

I am an unpaid carer.5

Jennifer Lynne avatar

Jennifer Lynne

Thank you for sharing, Frances! ❤️


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