How do you thrive with hemophilia in a small town? Get involved

Connections with those in your community can boost your life and health

I live in the small town of Punta Gorda, Florida. Though I have hemophilia B and von Willebrand disease, I don’t know anyone here or in the surrounding Charlotte County with a bleeding disorder. While living in such a community can present challenges when dealing with hemophilia, there are still many ways to connect and become more involved with others who have similar conditions.

Until I met Kayla Mack, who used to live in nearby Fort Myers, a couple of years ago, I hadn’t known anyone within a 100-mile radius with a bleeding disorder. My health issues were always on my mind, but I had no one to relate to or share my experiences with. Meeting Kayla changed that and made me feel less alone. Despite never meeting face to face, we connected virtually, exchanging invaluable resources and sharing our personal stories.

For many years, though, I’d been disconnected from the hemophilia community. The “tainted blood” era left a deep scar on me, and I found it hard to engage. But I’ve experienced a transformative shift in the past five years. I channeled my emotions into action, which has made all the difference.

You, too, can embark on this journey of personal growth and learning by exploring ways to get involved in the hemophilia community.

The wealth of resources available today is nothing short of remarkable compared with the scarcity of support during my formative years. My newfound involvement has helped me heal, and I’m empowered by contributing to a community I once felt alienated from. Being active in that community provided me with valuable support and resources. Here are some ways you can get involved.

Online communities and education hubs

Consider joining online communities specifically tailored to bleeding disorders. I’ve found the Coalition for Hemophilia B’s B Education Hub to be valuable for education and connection. It provides information, support, and opportunities to interact with others with similar experiences. You might also explore relevant Facebook groups and online forums to connect with others living with your bleeding disorder.

These virtual spaces allow you to share your journey, ask questions, and learn. You’ll find a supportive community that understands the challenges you face.

Attend national events

National events offer a rare opportunity to connect with experts, learn about the latest advancements, and engage with community members. For instance, the Coalition for Hemophilia B’s annual symposium brings professionals, patients, and caregivers together. Attending such events has given me valuable insights, informed me about research, and helped me network with others who share my interests.

These gatherings foster a sense of community and provide a platform for meaningful discussions. Keep an eye out for coming events in your region, or consider attending virtually if travel is challenging.

Local engagement

Connect with your local or area hemophilia chapter. These groups organize events, workshops, and support groups; my Florida chapter, for example, recently held an educational tea for women with bleeding disorders. Participating in such activities might allow you to meet others face to face, share experiences, and build lasting connections.

Try to attend chapter meetings, workshops, and awareness campaigns. You’ll receive support and contribute to the collective knowledge and advocacy efforts by participating.

Educate yourself

For self-managing your symptoms, it’s essential to understand hemophilia. I educate myself about treatment options, preventive measures, and handling bleeds. Knowledge empowers us all to make informed decisions and advocate for our health.

I try to reach out to healthcare professionals, read reputable sources, and stay updated on advancements in hemophilia care. Being well-informed enhances my ability to navigate challenges and access appropriate help.

Let your voice be heard

Share your story. Your experiences living with a bleeding disorder can be powerful. Whether through writing, public speaking, or posting online, your story can inspire others, reduce stigma, and create connections within the community. It can also help you find support, learn from others, and contribute to the collective knowledge and understanding of the disease. That’s how it’s happened for me.

Remember that your involvement matters. By connecting with others, sharing your experiences, and staying informed, you contribute to the broader hemophilia community. Even from a small town, you can make a meaningful impact and find support along the way.