This month has brought a holiday rush of hemophilia news on potential new treatments, studies, and acquisitions — all of which serve to raise hope during this solstice season, as we move past the shortest day of the year.
Solstice can be a metaphor for our time in the world of bleeding disorders — the days may be dark, but thanks to science and diligent advocates, we are moving forward into a new season.
The evolution and perhaps revolution in the treatment of hemophilia are moving at such a pace and complexity it is difficult to keep up. We are blessed in this community to have dedicated support organizations, treatment centers, and friends who understand what we are going through.
New diagnosis? Someone will welcome us and help us with our discovery. Difficulty understanding new treatments? Someone will guide us through the options. Need some moral support? Someone in similar circumstances will assist us in finding our way.
The chapter staff of the National Hemophilia Foundation, day in and never a day off, are the guideposts of our community, and their dedication to our needs is worthy of special recognition. While some of the staff are affected by a bleeding disorder, many are not — yet they are continually available to us: planning educational events, traveling to remote areas, advocating on our behalf within our complex web of relationships. To support our community’s families, those members of staff are away from their own, missing milestones and staying in touch by phone and text.
While our road may be difficult, we have one another and our team. We realize that not every condition or disease has this level of support, programming, or innovation. As the year draws to a close and we rush to celebrate the holiday, it is easy to become distracted by what’s happening in our families and communities — and forget those who help us along our daily path.
From friends and family members present and past to the researchers we may never meet to the staff of our disease foundations, and the doctors and nurses in our treatment centers, many of these people are there for us in our darkest times. Before we’ve sung “Auld Lang Syne,” we’ll replace the lyrics “take a cup of kindness yet” with “deliver a cup of kindness” to honor those who support us as we emerge from darkness into light.
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.