My Santa wish list for the hemophilia community

Dear Santa,

This year, I’ve decided to pen a special letter to you — not for myself, but for the global hemophilia community. As the holiday season fills the air with hope and goodwill, I can’t help but reflect on the challenges and dreams of those of us living with bleeding disorders. So here’s my Santa list for the hemophilia community, filled with wishes for a brighter future.

1. Better access to diagnosis and treatment: First on my list is a world where everyone with hemophilia has access to timely diagnosis and lifesaving treatment. In many countries, basic diagnostic tests and clotting factor therapies remain out of reach, leaving countless people at risk of unnecessary pain, disability, or even death. Santa, I dream of a day when every child born with hemophilia — no matter where they live — can receive proper care from the start.

For women with hemophilia, carriers, or those with von Willebrand disease or other bleeding disorders, the barriers to diagnosis are even higher. Too often, their symptoms are dismissed or misunderstood. My wish is for equitable access to care so no one has to suffer silently.

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2. Greater awareness and understanding: Santa, could you sprinkle some magic dust to spread awareness about hemophilia and other bleeding disorders? While our community has made great strides, there’s still a long way to go in educating the public — and even some healthcare professionals. Misconceptions about who can have hemophilia, how it’s treated, and what life with a bleeding disorder looks like can be isolating.

I wish for a world where people understand that women can have hemophilia, that treatment is an ongoing need, and that living with a bleeding disorder doesn’t define who we are. Education can lead to empathy, and empathy can change lives.

3. Advances in research and innovation: I’ve been extra good this year, so I’m asking for something big: continued advances in medical research. Gene therapy has brought hope to many, but it’s still in its infancy. I dream of a future where this groundbreaking treatment is widely available and offers long-term solutions for people with hemophilia.

I also wish for treatments that are more accessible and affordable for all. Imagine a world where we no longer worry about insurance denials or skyrocketing costs, where everyone can focus on living their best life instead of navigating insurance caps and other financial obstacles.

4. Support for caregivers and families: Behind every person with hemophilia is a team of caregivers — parents, siblings, partners, and friends — who offer endless love and support. My wish is for these unsung heroes to receive the recognition and resources they deserve. From mental health support to financial assistance, they, too, need a helping hand.

Let’s also make space for families navigating unique challenges, such as teaching a young child to self-infuse or supporting a teen facing the realities of living with a chronic condition. Santa, can you bring them strength and encouragement wrapped in a big, shiny bow?

5. A stronger, united community: Finally, I wish for the hemophilia community to grow even stronger. In this digital age, it’s easier than ever to connect with others who share similar experiences. Yet, there’s nothing quite like meeting face-to-face at events, retreats, or advocacy days. These moments remind us that we’re never alone.

My wish list includes more opportunities to foster these connections. Let’s amplify the voices of those who feel unheard, celebrate the milestones we’ve reached, and work together to overcome the challenges that lie ahead.

A season of hope

As I finish my letter, I’m filled with gratitude for how far the hemophilia community has come. Decades ago, treatments were rudimentary, and life expectancy was short. Today, we have tools and resources that once seemed like dreams. But there’s always more to hope for, and that’s the spirit of the season.

So, Santa, if your sleigh has room for these wishes, I know they’ll make a difference. To everyone reading this, what’s on your Santa wish list for the hemophilia community? Let’s share our dreams, big and small, because together, we can make them come true.

Wishing you health, happiness, and a magical holiday season.

With hope,

Jennifer Lynne

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.