Food for thought for the bleeding disorders community
Recent events promoted awareness, education, and solidarity
The past two weeks have been a whirlwind of activity for me, highlighted by two significant events.
First, I attended an event in Washington, D.C., called “Voices of Hemophilia,” which was sponsored by the biotech company CSL Behring. This small but powerful gathering brought together eight leading voices from the hemophilia community to discuss pressing issues, including gene therapy for hemophilia B, specifically Hemgenix (etranacogene dezaparvovec).
I’m honored to have been chosen to attend. Later I plan to share more about the insightful discussions and lessons that were learned.
Next, I spent the weekend at a women’s retreat hosted by the Bleeding Disorders Foundation of Florida in St. Augustine. Living far from both state chapters — I’m in Punta Gorda, in the southwest part of the state — makes it so I rarely get to participate in their events.
The overnight retreat, which was sponsored by the pharmaceutical company Octapharma, provided a rare opportunity to explore the historic city of St. Augustine while engaging in educational activities and connecting with new and familiar faces.
The event began with introductions, in which participants described their connections to the bleeding disorder community. An overwhelming majority of participants said they’d been diagnosed with von Willebrand disease. Other attendees had mild hemophilia or were hemophilia carriers. Two young women had factor V deficiency.
Among those with hemophilia, most had hemophilia A and identified as carriers, while I and one other woman had hemophilia B.
Why ‘carrier’ is a loaded word
On the second day of the retreat, Cynthia Gauger, a recently retired pediatric hematologist/oncologist, delivered a compelling presentation addressing the various diagnoses and treatments for the bleeding disorders described by attendees. She made a thought-provoking suggestion for those who identify as carriers of hemophilia, advocating that they instead identify as having mild hemophilia.
Such a change in terminology, she said, could help to ensure that their symptoms are taken seriously, particularly by healthcare professionals outside the hemophilia community. It could also make treatment more accessible for women. By identifying as having mild hemophilia, women would be more likely to receive the appropriate care, Gauger said.
A perfect example of the importance of this distinction is Kim H., whom I interviewed for this column two years ago. She informed her doctors before having minor knee surgery that she was a carrier of hemophilia A, with a factor VIII level of 50%.
Unfortunately, her doctors didn’t take her carrier status seriously, which led to severe complications. Kim suffered significant bleeding from what should’ve been routine surgery. She’s now disabled as a result. I plan to provide a follow-up to Kim’s experiences soon.
I’m honored to have participated in these thought-provoking events and look forward to sharing more about them in the days to come.
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.
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