My Christmas wish list for the hemophilia community

Dear Santa,

It’s that time of year again: when the lights twinkle, music fills the air, and I start making my list. But this year, I’m not wishing for things you can wrap. These wishes are for the hemophilia and bleeding disorders community — the people I love and work alongside all year long.

So, Santa, if you’re listening, here’s what I’d love to find under our collective Christmas tree.

1. Faster diagnoses for women and girls

For every girl who’s told she “just bruises easily” or “girls don’t get hemophilia,” I wish for empathetic doctors who look deeper. Too many of us spend decades searching for answers for our symptoms, being dismissed, or told our bleeding is “normal.”

My first wish is for faster diagnosis and treatment. No one should grow up thinking that chronic pain, nosebleeds, or excessive menstrual bleeding are just something they have to live with. Every girl deserves to know her story, her body, and her diagnosis early enough to be cared for properly.

2. Affordable access to treatment

I wish that the words “copay accumulator” or “prior authorization” would vanish from our vocabulary. Treatments for hemophilia have come so far, but access shouldn’t depend on what’s in someone’s wallet or which insurance company a person has.

I dream of a world where all people living with hemophilia — no matter their income, zip code, or coverage — can get the medication they need without fear or financial strain.

3. Continued innovation

We’re living in an era of remarkable scientific progress. Gene therapy, non-factor treatments, and extended half-life products have been life-changing.

But I wish for even more. Not just new medicines, but research and clinical trials that include all of us: women, people with inhibitors, those with rare factor deficiencies, and those in countries where treatment is scarce. Let innovation be guided by empathy and equity.

4. Education in emergency rooms

Santa, can you visit every emergency room and drop off a little handbook on bleeding disorders? Because walking into the ER with a bleed shouldn’t feel like a test of how well we can advocate for ourselves.

I wish every doctor and nurse could recognize the urgency of treatment, listen to patients, and never make anyone with a bleeding disorder feel invisible or doubted.

5. Compassion in care

Behind every diagnosis is a human being with fears, frustrations, and resilience. My wish is for healthcare providers who take the time to listen — really listen — and recognize that we’re more than our factor levels or lab reports.

A little compassion can heal in ways no medicine ever will.

6. Support for caregivers

Parents who stay up all night checking for bleeds. Partners who help infuse. Siblings who learn empathy early. They carry so much weight quietly.

This Christmas, I wish them rest. And the recognition that their love is a form of medicine, too. Caregivers deserve care, too.

7. Community connection

It’s healing to be surrounded by people who get it. Whether it’s a national symposium, a women’s retreat, or an online chat in the middle of the night, connection reminds us we’re not alone.

I wish for stronger networks, safe spaces, and laughter that echoes throughout hotel hallways at conferences — the kind of laughter that says, “I see you; I get it.”

8. Awareness year-round

Our hemophilia challenges don’t end when the tree comes down or awareness months end.

I wish for awareness that lasts all year long, so teachers, employers, and even lawmakers understand that bleeding disorders are lifelong. Every month should be a month of awareness, advocacy, and progress.

9. A more evolved approach to pain

If I could wrap this one up in a box and hand it to every doctor, friend, or loved one, I would. Pain is such a complicated part of life when you have a bleeding disorder. It isn’t just the pain of a joint bleed or the deep ache that lingers for days afterward. It’s also the invisible kind. The pain of being dismissed when you say something hurts. The pain of hearing, “You look fine,” when you’re struggling to walk or to sleep.

I wish for a world where pain, in all its forms, is more accepted and respected. Where providers don’t assume that because our joints look normal, we must be OK. Where women and men alike can speak openly about chronic pain without being labeled dramatic or weak.

10. Hope

Finally, my biggest wish — the one that ties all the others together like a bow on a present — is hope.

Hope for new treatments. Hope for understanding. Hope for every parent who worries, every young adult finding their way, and every woman still fighting to be believed. Hope that tomorrow will bring more light than today.

Santa, I know I’m asking a lot. But I’ve seen enough miracles in this community to know that magic isn’t just found at the North Pole. It’s found in researchers who keep pushing, advocates who refuse to be quiet, and families who face each day with courage and grace.

So if you can’t fit all these wishes in your sleigh, it’s OK. We’ll keep working toward them ourselves — one conversation, one act of kindness, one infusion at a time.

Wishing everyone in the bleeding disorders community a peaceful holiday season filled with love, laughter, and just a touch of magic.

Love,
Jennifer Lynne