I advocate so the people in power hear from someone affected by hemophilia
I'll soon attend the Coalition for Hemophilia B's Advocacy Education Summit
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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.
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.
cedric stephane
Am cedric, hemophilia type A from Cameroon.
cedric
Advocate for Hemophilia in Cameroon So That Those in Power Hear from Someone Living with the Condition
By Rev. Cedric
For many people in Cameroon, hemophilia is a word they have never heard before. For others, it is a condition they misunderstand. But for me, hemophilia is not just a medical term—it is my daily reality.
I advocate for hemophilia because I believe that those who make decisions about healthcare policies, funding, and access to treatment should hear directly from people whose lives are affected by the condition. Statistics are important, but behind every number is a human being with dreams, challenges, and a desire to live a full and dignified life.
Hemophilia is a rare genetic bleeding disorder that prevents blood from clotting properly. A simple injury that might be minor for someone else can become a serious health emergency for a person living with hemophilia. Internal bleeding, especially into joints and muscles, can cause severe pain, disability, and long-term complications if not treated promptly.
In Cameroon, many people living with hemophilia face significant challenges. Access to diagnosis remains limited, particularly in rural communities. Some families spend years searching for answers after repeated bleeding episodes in their children. Others struggle to access treatment because of financial barriers, limited healthcare infrastructure, and inadequate awareness about the condition.
As someone living with hemophilia, I understand these realities firsthand. I know what it means to navigate a healthcare system that is still developing its capacity to support people with rare disorders. I know the fear that comes when treatment is unavailable or delayed. I know the frustration of explaining a condition that many people, including some healthcare workers, may not fully understand.
These experiences have inspired my commitment to advocacy.
My advocacy is not only about raising awareness; it is about ensuring that people living with hemophilia have a voice in the conversations that affect their lives. Too often, policies are developed without sufficient input from those directly impacted. Yet who better to explain the challenges than the people who face them every day?
I speak up because every child born with hemophilia in Cameroon deserves an early diagnosis. Every patient deserves access to safe and effective treatment. Every family deserves accurate information and support. And every person living with the condition deserves the opportunity to pursue education, employment, and community life without unnecessary barriers.
Advocacy also means challenging misconceptions. Hemophilia is not a curse. It is not a punishment. It is not contagious. It is a medical condition that can be managed successfully when proper care and treatment are available. With the right support, people living with hemophilia can become teachers, entrepreneurs, doctors, engineers, pastors, community leaders, and agents of change.
As the founder of initiatives that support vulnerable communities, including people affected by hemophilia, I have witnessed the power of awareness and collective action. I have met families who felt alone until they connected with others facing similar challenges. I have seen hope restored when treatment became available. I have watched young people living with hemophilia discover that their condition does not define their future.
Cameroon has made progress, but much more remains to be done. Greater investment in rare disease care, stronger healthcare systems, improved access to clotting factor treatment, enhanced training for healthcare professionals, and sustained public awareness campaigns are essential if we are to improve outcomes for people living with hemophilia.
My message to policymakers, healthcare leaders, development partners, and the wider public is simple: listen to the voices of those living with hemophilia. Include us in discussions. Partner with us in designing solutions. Recognize our lived experience as a valuable source of knowledge.
I advocate because silence changes nothing.
I advocate because every person living with hemophilia deserves to be seen, heard, and supported.
I advocate because I believe that when those in power hear directly from someone affected by hemophilia, they are more likely to understand the urgency of our needs and the importance of taking action.
Most importantly, I advocate because I dream of a Cameroon where no child suffers unnecessarily from a condition that can be managed, where no family feels abandoned, and where every person living with hemophilia can live with dignity, hope, and opportunity.
That is the Cameroon I work for. That is the Cameroon I believe is possible.
Jennifer Lynne
Thank you, Rev. Cedric. I would love the opportunity to talk with you someday about your experiences living with hemophilia in Cameroon. I imagine you have a unique perspective, and I'd be honored to hear your story.