Why I Say ‘Yes’ to the Bleeding Disorders Community

Recently, I opened an email from a company inviting me to share my insights regarding bleeding disorders and how my family handles the struggles of chronic illness.

Before my sons were born, I think I would’ve hit the delete button without giving a similar invitation a second thought. But now, I’m almost responsible for sharing my journey as a caregiver with others. The goal is that by telling my story, I may help others and give meaningful feedback to medical professionals as they continue to advance treatments for hemophilia, which my sons have, and other bleeding disorders.

This opportunity isn’t my first invitation to participate in a panel discussion. I’ve taken part in several events hosted by pharmaceutical companies to talk about marketing strategies and other ways to inform the community about innovative ways to treat the bleeding disorders population.

Within each group, I found caring individuals who bravely shared their stories, hoping newly diagnosed families might find hope and vital resources to treat their loved ones. Each voice, including mine, mattered as we weaved a tapestry of what it means to live with bleeding disorders from diagnosed people and those who serve as caregivers.

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Throughout the panels in which I participated, several vital topics made me realize that I’m not alone on my journey. To maintain confidentiality, I won’t list what we discussed. However, the essential part of the experience is that I felt I belonged. I realized that I didn’t live on an island and that people in this world understand my struggles because they walk along the same road. We share familiar stories filled with similar emotional responses.

Every time each group finished a discussion session, I left hearing the mantra in my head, loudly crying, “I’m not alone!”

In each group, I discover something about my journey reminding me that my words matter and that a great crowd of witnesses surrounds me. With each decision I make regarding my boys’ health, I feel incredible voices gather around to offer me the best advice possible. I breathe in the sense of relief, overwhelmed with the feeling that I’m not alone. My blood brothers and sisters rally around me to hold me up and celebrate my choices.

I don’t know where anyone else is on their journey. Some who read this column may not be able to share personal stories for many reasons. If not, there is no shame in not being ready. The most important thing is that we choose to participate in the life of the bleeding disorders community.

Whether or not one participates in a panel discussion, an important idea must come to light: Every voice matters. The experiences of one individual can help someone who encounters the same struggle. Together, all our life experiences inform the greater community. We both give and receive valuable information that empowers our loved ones as we share it.

We must consider that if we choose not to participate in the bleeding disorders community, many people may fail to receive critical information that they need to help their loved ones. Likewise, we may not hear stories that help us when we need advice.

So as I opened my email and confirmed the panel’s legitimacy, I couldn’t help feeling joyful that I could meet new people in the community and that together, our responses may prove beneficial. I also look forward to hearing stories that may help my sons experience a higher quality of life.

By participating, I find a holy place (set apart) for the giving and sharing of priceless information. And to think, opportunities to grow my community begin by saying yes to someone who reaches out to me.

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.