Why I’m excited about NBDF’s Bleeding Disorders Conference
The annual event happens Aug. 13-15 in Orlando, Florida
Written by |
This week is an important one for our community!
It’s time for the annual Bleeding Disorders Conference (BDC), which is hosted by the National Bleeding Disorders Foundation (NBDF) and provides an opportunity for the bleeding disorders community to come together for critical education, advocacy conversations, connection, and lots of laughter, tears, and hope. This year’s conference will be held Aug. 13-15 in Orlando, Florida.
I am particularly excited because I’ve had the privilege of serving on the BDC planning committee. I can tell you that the staff at NBDF and the volunteer committees have spent countless hours working to create an event that caters to the needs of patients with bleeding disorders and the caregivers and medical providers who support them. Bringing these groups together under one roof creates an atmosphere conducive to growth on so many levels.
I’ve personally felt the power of attending past BDC events. The education I received at conferences over the years has directly affected my care, and my current hemophilia treatment regimen is a result of being educated about women with hemophilia and how to advocate for the care I needed. It was nothing less than life-changing.
Participating in sessions
This year, I am participating in a number of sessions I’m really excited about.
One I’ve prepared is a presentation about how different faith systems respond to bleeding disorders and to healing in general. Yes, some sacred texts mention bleeding disorders directly! As part of the presentation, I’ll share what I’ve learned about the struggles and gifts that come from finding faith while living with a bleeding disorder, and attendees will have the chance to reflect on their own faith experiences, too. Faith isn’t defined solely by being part of a major religion, but also by finding solace in nature, communing with loved ones, or embracing inner strength.
I’m also speaking on a panel that addresses aging with hemophilia, an area where research remains limited, in part due to the number of patients who died as a result of blood products being contaminated by HIV in the 1970s and ’80s. Thousands of people with hemophilia died of AIDS, which stunted academic research on aging with bleeding disorders. We remain in uncharted territory as the current generation ages, and medical professionals don’t always know how bleeding disorders will affect aging. We are learning together.
Lastly, I’m part of a panel that will discuss preparing for surgery with hemophilia. Many who read my column know I had major surgery for superior mesenteric artery syndrome (SMAS) in December.
I learned so much from that experience, but the reality is that most research on hemophilia and surgery has been on adult men, so there is limited information for women. The only peer-reviewed medical journal articles I found on women and surgery were about reproductive surgeries. We are more than our uterus!
After my surgery, I learned that subsequent inflammation can affect healing. My factor levels were higher than anticipated post-surgery. Thankfully, we found a plan that kept me safe by balancing healing and bleeding control.
Before my SMAS surgery, I spent months researching and advocating for a diagnosis. I credit my tumultuous journey toward a hemophilia diagnosis as the training ground that taught me how to self-advocate. I truly believe advocating for a proper diagnosis saved my life.
Conferences like this one keep changing my life, one conversation at a time. Come find me! I’d love for ours to be one of them.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 other 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
