My Takeaways From This Year’s Bleeding Disorders Conference

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders.

Nothing will replace great friends getting together in person to enjoy one another’s company. Nevertheless, leading experts in the field of treating and caring for bleeding disorders — such as Dr. Guy Young, Dr. Leonard Valentino, and Dr. Mark Reding — provided valuable material about new drug therapies currently in clinical trials. Hopefully, many medicines under the watchful eyes of leading researchers will offer better ways to manage hemophilia. Experts included exciting information about gene therapy, including projects in clinical trials and future possibilities related to the cure of hemophilia. There were many more sessions to hear about innovative treatments that appear possible soon.

Dr. Guy Young presented one of the most informative talks I heard about different therapies available for those with hemophilia. His insights included the pros and cons of treating with plasma-derived products, synthetic products, and non-factor products. Each medicine assists in the treatment of hemophilia in different ways but his instruction clarified that our loved ones do not squish into a one-size-fits-all model — each person’s journey manifests differently. My sons have experienced each type of factor product while fighting different problems throughout their lives.

Another critical issue for my family is chronic pain management, so I’m grateful that a team of physicians specializing in the treatment of chronic pain shared innovative information that equips my family to combat my younger son’s pain that lingers from years of breakthrough bleeding.

Attending this conference pulled me back into the needs of my family and into real-life issues that almost take a back seat during these perilous times. I refocused my energy to remember that my sons’ problems shouldn’t be overwhelmed by other events. I must remember that no matter what goes on in the world, I should continue to provide the best care I can to those I love dearly.

I finished the event with a newfound respect for the National Hemophilia Foundation, which could have chosen to cancel the conference until next year but instead pursued a unique approach to providing detailed information that enhances my sons’ quality of life.

I am grateful to be a part of a community that reaches out to everyone, encouraging us to hope in a time when we need a sign of promise.

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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.