Community is everything when you have a rare disease
Events like the Bleeding Disorders Conference create a heartbeat of connection
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The National Bleeding Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference (BDC) was held last weekend, and it’s a good reminder of something I don’t say lightly: Community is everything. Sometimes we underestimate the power of gathering. It is truly a critical component in our capacity to navigate life with a rare disease.
The opening session of BDC started with a drum line that Dawn Rotellini, NBDF’s chief operating officer, likened to a heartbeat. I loved her analogy because it is so true.
When a person receives a bleeding disorder diagnosis, it can be one of the most overwhelming experiences. In one moment, everything changes. The future can feel uncertain, and if a newly diagnosed person turns to the internet, they can drown in an abundance of information that is hard to sort through. Conferences like BDC become the bridge.
As a woman with hemophilia A, I am so happy that NBDF is placing a high priority on ensuring that women and girls with bleeding disorders receive the diagnosis they need. The opening ceremony mentioned the movie “Dismissed,” the FED UP Act — legislation designed to hasten diagnosis — and NBDF’s strong commitment to ensuring women and girls are not forgotten. As I and fellow columnist Jennifer Lynne often note: Women and girls with bleeding disorders deserve access to diagnosis and treatment, too.
Gathering together is a gift
The first morning of the conference, I was part of a session that welcomed newcomers to BDC. It was so fun to see people excitedly look through the program for the first time. Seeing all the session options helped attendees understand the time and effort that went into creating a comprehensive event that seeks to meet the many varied needs of the bleeding disorders community. As they connected with each other at their tables, I saw eyes light up. That’s the knowing look that says, “I just met you, but I am certain you understand me.” It’s the heartbeat that is BDC.
I was also able to attend a pre-conference session on inhibitors, which are rare. When a person develops an inhibitor, their body attacks the factor replacement products they use to help their blood clot, making it harder to treat bleeds when they occur. Inhibitors develop in approximately 30% of men with severe hemophilia A and are even more rare in hemophilia B.
When a family is struggling with an inhibitor, they can feel misunderstood even at a hemophilia conference. Rare complications among the bleeding disorders community can create their own additional sense of isolation. Sometimes other community members just do not understand the additional struggles, and that can also be scary. As a result, it can feel lonely. Gathering this community together and providing education and connection is a gift.
As a person who has struggled with my factor replacement products not always working like they should, it means a lot to speak with others who understand — there’s that heartbeat of community and connection again. Just like the drum line, it beats together, loudly. And even when we feel weak, that community heartbeat helps hold us up. We find strength in each other to persevere. That’s why community is everything.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 other 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
