My Healthcare Providers Are Still Learning About Hemophilia

Over the past few years, I have learned that bleeding disorders are complex, particularly for women. Hemophilia is not always easy to understand or treat. It can take women up to 16 years to receive an accurate diagnosis. Then treatment plans are created, which can be challenging to hone.

Diagnosis delayed

I struggled for years to obtain a diagnosis. I’ve had unexplained bleeds from infancy. My parents, desperate to protect me, wrapped the furniture in their apartment with diapers to soften the sharp edges — including the piano. Upon seeing the piano in their diapered apartment, one friend exclaimed, “That’s why they call it a baby grand!” 

When I cut myself, I needed stitches to stop the bleeding (five times by age 5) and I bruised easily. I am a hemophilia A obligate carrier, as my father passed the condition to me. However, doctors never made the connection.

My childhood was full of issues and injuries I can now attribute to an undiagnosed bleeding disorder. I had nosebleeds, swollen ankles, and cuts that took forever to heal. My periods were heavy and long. I did not know this wasn’t normal.

Growing understanding

Many women who have hemophilia or who are symptomatic carriers have a growing understanding of their hemophilia mutation and the issues it causes. It can take years of threading pieces together to weave a comprehensive picture of hemophilia’s impact on one’s life. Many women are in denial as they compare their mild hemophilia to their male relatives’ moderate or severe hemophilia. Hemophilia manifests differently in women and in those with a mild form of the condition. The bleeds can be constant, but usually are not as extensive or severe as in someone with severe hemophilia.

Creating treatment plans

I reached out to my doctors when I realized that the aches and pains I experienced regularly were connected to hemophilia. Truth be told, sometimes I needed to talk with my doctors and health professionals to understand that I was indeed bleeding. When someone’s diagnosis is delayed, they may not understand that their healing rates are not normal. My cuts took three to six weeks to heal, but I did not understand that the same cuts might heal in a week or less for others.

I asked to develop treatment plans. Some medical professionals hesitated because they believe women do not manifest hemophilia or need treatment, except in emergency situations. Others listened. We created plans to address bleeding episodes and protect me in emergency situations or during surgeries.

Questioning treatment plans

I was thrilled to have a treatment plan. But over time, I found the plan was not working for me. I still was having bleeding episodes. I documented these with photos for my doctors whenever I could. I also researched the variant, or mutation, that caused my hemophilia. There are many variants that cause hemophilia. The type of variant can correlate with condition severity and inform treatment options.

‘We don’t know’

I have shared research on my mutation and documented my bleeds to help healthcare providers fine-tune my treatment plan. It is not perfect. I am still having issues. I am grateful to my treatment team for listening to me. They are not dismissive and want to keep me healthy, safe, and active. When I share my ongoing struggles and ask what I should do, they say three words that mean a lot to me: “We don’t know.”

I have a treatment team that is confident enough to admit they do not have all the answers. “We don’t know.” I have a doctor willing to do the research. “We don’t know.” They do not fake answers or lead me down paths that make no sense. They are willing to learn.

Admission of their humanness and the limits of their immediate knowledge is comforting. With so many mutations, they may not understand my bleeding phenotype. That they openly acknowledge unknowns gives me great comfort and commands an enormous amount of respect.

If all providers were capable of this honest communication, I believe care would improve. They may not know, but they are actively working to figure it out. I am extraordinarily grateful.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.