Deborah Holzapfel: The Reality for Women with Hemophilia B
Deborah Holzapfel, Associate Director at Enzo Biochem Inc, shared Kim Phelan‘s post on LinkedIn:
”Women with Hemophilia B deserve to be seen. Diagnosed. Believed.
I say this as someone who has studied this disease at a genetic and molecular level – and I still had it wrong.
When Hemophilia B entered my life through a family member, I understood the science.
And like most, I believed women were simply carriers – they passed the gene on, but the disease didn’t truly affect them.
That understanding was incomplete. And it has cost women enormously.
The Hemophilia B Coalition changed that for me.
They revealed a much larger picture that my textbooks never fully captured.
Carrier women are not silent vessels of a gene – many experience real, debilitating symptoms that have gone unrecognized for years.
And because Hemophilia B doesn’t present the same way in women as it does in men, those symptoms have been dismissed, minimized, and overlooked by the very medical system meant to help them.
If someone with a scientific background could miss this reality, imagine how many others have too.
The Coalition and Kim Phelan didn’t just change my family member’s life – they changed mine and the rest of my family’s.
That’s why their recent post stopped me in my tracks: the women in purple had been properly diagnosed.
The women without purple? Still waiting. Still unheard.
In 2026, the Coalition pushes forward – and by 2027, their hope is that every woman still waiting for answers will finally have them, and will be wearing purple.”
Kim Phelan, Chief Executive Officer at The Coalition for Hemophilia B, shared on LinkedIn:
”The women in purple have been seen.
They have been properly diagnosed with Hemophilia B.
The women without purple… are still awaiting diagnosis. Still waiting to be seen and believed.
This is why we do this work.
In 2026, we push forward.
And by 2027, our hope is that every woman awaiting diagnosis will finally have answers, and will be wearing purple.
Because every woman deserves to be seen, believed, and properly diagnosed.”
Proceed to the video attached to the post.
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