I advocate so the people in power hear from someone affected by hemophilia

I’ve been standing in front of my closet longer than I’d like to admit. It’s not vanity. It’s because I know what I want the clothes to do: I want to walk into a marble hallway and have the person across from me see someone steady, prepared, worth listening to — before I’ve even said a single word about bleeding disorders.

The right blazer is armor. So I stand here, holding up options, rehearsing a version of myself who isn’t nervous.

In a few days, I’ll be in Washington D.C., for The Coalition for Hemophilia B‘s Advocacy Education Summit, walking the long corridors of the U.S. Capitol to talk with people who hold real power over how my community lives. Some of them have never heard the word hemophilia said out loud by someone who is affected by it. That’s the whole point of going.

What shoes can I stand in for nine hours and still walk a mile of hallway? What do I put in a clear bag that will clear security without slowing the line? These are the questions that keep me up the night before. Not the policy. The policy I know cold. It’s the choreography of being a body in that building — a body that bruises, that bleeds, that has spent a lifetime managing itself — that I have to plan for.

I’ve learned to lay it all out the night before. Outfit on the chair. Bag packed and rechecked. Talking points I won’t read from but want near me anyway, the way you keep a life jacket within reach even when you can swim.

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A face, not a number

It would be easier not to go. I could send an email, sign a letter, repost something and call it advocacy, and no one would fault me. There are weeks the fatigue makes that feel like the only honest option.

But here is what I’ve come to believe after doing this more than once: A person in the room changes the room. A statistic is forgettable. A woman standing in front of you, telling you what it’s actually like to be dismissed, to bleed and be told it’s normal, to fight for coverage of the thing that keeps her alive — that lodges somewhere. You can scroll past a number. It’s much harder to scroll past a face.

I learned this years ago, in a very different room. For several years, I served as a guardian ad litem. My job was to stand in front of a judge and advocate for children who couldn’t speak for themselves. I got to know the kids, their families, their circumstances, and I’d compile a report with my recommendations, pages of careful, honest detail about a child’s life.

After a while, I realized something: It’s easy to skim a report. So I started including photographs of the children in mine. It changed everything. A judge can move quickly through paragraphs. It’s much harder to move quickly when the child whose future you’re deciding is looking back at you. The face made the words matter.

I’ve never forgotten that. It’s why I get on the plane instead of sending the email. My community deserves more than a paragraph someone can skim. They deserve a face in the room.

So I go. I put on the blazer and the sensible shoes and tell the truth about my life to strangers who can do something about it.

When I finally close my suitcase, I think about what’s actually inside it. Yes, the clothes, the clear bag, the medication, the snacks I’ve learned never to travel without. But also the years. Every appointment where I had to explain my own body to the person who was supposed to understand it. The friends in this community who can’t make the trip, whose stories I carry up those steps alongside my own. That’s the heaviest thing in the bag, and it weighs nothing at all.

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 consult your physician or another qualified healthcare 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.