Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the exhibits, and other benefits that come with traveling to another city. But I like the opportunity to hear great thinkers in the community, as doctors and caregivers share their experiences with the hope that better treatment is right around the corner.
I needed to hear good news in this time of chaos. Who would have thought that it would come to me in a virtual format? Change is coming if we hold on and continue the journey with our loved ones.
Another issue I followed was providing medical aid to children in developing countries. While several organizations assist those who cannot afford factor products, I felt more hope that our community is making a concerted effort to help others in need.
Our focus may shift from our backyard toward a more global outreach. No child should lack access to appropriate medical care. Our world is changing, and while we celebrate the advancement of treatment in the bleeding disorders community, we must not forget our fellow brothers and sisters in the struggle.
My hope builds on the many ways that brilliant teams of researchers and doctors continue to make life better for our loved ones with hemophilia. Many years ago, the thought of some of the current treatment regimens almost sounded like science fiction.
I remember a time early on in my association with the National Hemophilia Foundation when I shrugged off the possibility of a treatment that required injecting rather than infusing. “I wouldn’t have to find a vein? That is crazy,” I thought at the time.
Now, “MacDonald the Younger,” as I call my youngest son, only injects subcutaneously every two weeks. My struggle gave way to new hope, thanks to the dedicated men and women of our community who made sure that my children’s efforts would not remain the norm for awfully long.
For me, one of the most important parts of attending national events is reconnecting with my fellow brothers and sisters. They continuously support and encourage me to be my best self. Unfortunately, our gatherings won’t happen this year. At best, we may talk virtually.
It doesn’t replace the good times I’ve had with those who know me well and who journeyed with me for many years. Conferences are where we catch up, sit at dinner tables, drink endless amounts of alcohol, and share our triumphs and struggles. We laugh and cry together, always agreeing to stay connected. This fellowship nourishes my soul and gives me fuel to face another year, knowing that I am not alone.
The hardest part of a virtual conference is finding ways to engage electronically so that I feel renewed and ready to handle the good and the not-so-pleasant things that come with a bleeding disorder. As a caregiver, the gathering is as important to me as breathing air.
Maybe the best way to accomplish this is by scheduling a virtual get-together. While another Zoom meeting isn’t ideal, it does allow us to visit and share. We, as a community, are used to doing what we can to forge through any obstacle.
It is with extreme gratitude that I celebrate the opportunity to still have an annual conference, even in the face of a pandemic. Hearing about the possibilities of genetic trials, advances in treatment, and opportunities to help our brothers and sisters in need reflects the importance of our medical community’s work. I find hope in their commitment to my family by continuing to search for new ways to empower my boys to live their lives freely and fully.
With such a good team, who couldn’t hope for a bright future?
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.
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