For women with hemophilia, progress is slow but tangible
Today, we're seeing more women diagnosed earlier, but there's still work to do
For years, writing about women with hemophilia and other bleeding disorders has meant telling stories of delayed diagnoses, silent pain, and lives shaped by the absence of care. In many ways, it still does. But lately, I think something has shifted.
The change has been gradual, and I don’t believe it’s widespread yet. But it is real in small and meaningful ways.
This year, I’ve heard from women whose daughters were diagnosed quickly, something that simply didn’t happen in the past. I’ve also heard from a few grandmothers who are seeing their granddaughters grow up with answers about their health, rather than facing years of uncertainty. And while these stories still feel too uncommon, they matter.
I’ve also met women with factor levels that fall within the so-called normal range who are finally being taken seriously, and others who are beginning prophylaxis — not because a lab number suddenly allowed it, but because their lived experiences could no longer be ignored.
Care now within reach
To me, that shift matters more than any lab value, because it means that women with bleeding disorders are finally being seen and adequately treated. Conversations are evolving, care is becoming more individualized, and fewer women today are being dismissed by medical providers simply because their lab numbers don’t fit neatly into a reference range. Care that once seemed unattainable for many women is now within reach.
Nevertheless, despite this progress, not enough has changed for many women with bleeding disorders. I still hear from some who’ve been told their symptoms are “normal,” who’ve been sent home without answers, and who’ve learned to second-guess their own pain because those in the healthcare system refuse to validate it. Progress is happening, but not evenly or quickly enough.
When I think about girls growing up today, I see both hope and a sense of urgency. Some will have treatment plans instead of question marks. Others will have to fight for their condition to be recognized. Our responsibility is to make sure that fewer women fall into the latter category.
We still have work to do, and we always will. However, we do have reason for hope, as enough progress has been made to prove that change is possible.
If you feel unseen or worn down from having to fight to be believed, I want you to know that your story matters — even if it seems like no one is listening.
If you’re raising a daughter or doting on a granddaughter with a bleeding disorder, please know that you are part of a long line of women who are changing what comes next, even if the process feels slow.
Our story is a shared one, and it’s still being written.
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.
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