Ask Jen: I Feel Isolated with Hemophilia in My Small Town—How Can I Connect with Others?
Dear Jen,
My family resides in a small community, and we often feel isolated in dealing with hemophilia. What are some ways for us to become more involved in the hemophilia community?
Signed,
Seeking connections beyond our small-town bubble
Dear Small Town Hemophilia Hero,
I live in a small town too! Living in a small community with limited resources for dealing with hemophilia can indeed feel isolating. But fear not. There are ways to connect and become more involved in the hemophilia community. Remember, you are not alone in this journey. There are others, like me, who have walked this path and are here to support you.
For many years, I, too, felt disconnected from the hemophilia community. The 'tainted blood' era left a deep scar, making it hard to engage. However, in the past five years, I've experienced a transformative shift. I chose to channel my emotions into constructive action, and it has made all the difference. This journey of personal growth and learning is something you can embark on as well, as you explore ways to get involved in the hemophilia community.
Today, the wealth of resources available is nothing short of remarkable compared to the scarcity of support during my formative years. My newfound involvement offers personal healing and empowers me to contribute to a community I once felt alienated from. This sense of empowerment is something you can also experience, as you step out of your small-town bubble and into the wider hemophilia community.
Being active in the community can provide valuable support and resources. Here are some ways you can get involved:
Connect with Others:
Consider joining the Coalition for Hemophilia B’s Education Hub, a valuable online resource for education and connection. Other options include FaceBook groups and online forums.
Attend national events. I recently returned from the Coalition for Hemophilia B’s annual symposium, held this year in Dallas, Texas. These events provide a unique opportunity to meet experts, learn about the latest advancements, and connect with others in the community.
Connect with your local Hemophilia Chapter. The Florida chapter recently held an educational lunch for women with bleeding disorders.
Learn About Hemophilia:
Educate yourself about hemophilia and its management. Understanding your treatment options, preventive measures, and how to handle bleeds is crucial for effective management and maintaining a good quality of life.
During COVID-19, organizations created fabulous online content and continue to run online events. These events are perfect for those of us living in small towns.
When possible, learn to self-infuse. I have much less anxiety knowing I have medication on hand and can poke myself with a needle and find a vein if needed.
Find Good Medical Care:
Most hematologists specialize in cancer. Seek care from a comprehensive hemophilia treatment center (HTC). These centers specialize in managing bleeding disorders and provide essential resources. They are also current on the latest treatment options for your care. I travel over two hours to visit my HTC in Tampa.
Let Your Voice Be Heard:
Share your story! Sharing your own experiences living with hemophilia can be powerful. Whether through writing, public speaking, or online, sharing 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 hemophilia.
Volunteer
Many organizations working in the hemophilia space rely on volunteers for various activities such as fundraising events, advocacy campaigns, or organizing community outreach programs. Contact local hemophilia organizations or favorite national associations to inquire about volunteer opportunities. For instance, you could volunteer to help organize a local fundraising walk or assist with a virtual awareness campaign.
Remember, even in small communities, there are ways to connect with others and access resources and support for dealing with hemophilia. You're not alone, and by reaching out and getting involved, you can make a difference for your family and others facing similar challenges.
Signing off with a dash of determination and a sprinkle of hope,
Jen
About Jen
Jennifer is an entrepreneur whose passion for digital marketing and technology is matched only by her profound connection to the bleeding disorder community. Diagnosed with hemophilia B and Von Willebrand’s disease at a young age, Jennifer’s journey fuels her passion for advocacy and awareness.
A University of Wisconsin, Madison graduate, Jennifer holds a dual BA in marketing and journalism. Originally from Brookfield, Wisconsin, Jennifer now enjoys the sunny ambiance of Punta Gorda, Florida. Through her advocacy efforts, she aims to amplify the voices of those affected by hemophilia and other bleeding disorders, with a special emphasis on empowering women. Her column, Ask Jen, reflects her unwavering dedication to making a meaningful impact in the lives of others.
