At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia.
In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number of people from the bleeding disorders community were infected with HIV and hepatitis C. This occurred before the U.S. Centers for Disease Control and Prevention required donated blood to be tested before it was used in medicines to treat spontaneous internal bleeding. Many families were forever changed due to the lack of attention given to undetected blood-borne pathogens.
Today, with medical advancement, contaminated products are almost nonexistent.
Holding the history of hemophilia in my soul, I entered that sacred space at my first annual conference in 1997, to remember those who are no longer with us. In a dimly lit room with a podium and a small table decorated with flowers, pictures, and multicolored fabrics, guests approached the microphone to share their stories and remember their loved ones. Some stories projected a sense of remorse and sorrow, while others stressed the importance of remembering spouses, sons, daughters, aunts, uncles, friends, and co-workers.
This sacred space invites us to never forget those we hold close in our hearts. We all surround the person who boldly speaks out to remember. We gather around them as a sign of unity. We offer a symbol of hope, not with words, but rather our presence.
We stand firmly together, remembering that each life lost held great importance. We cherish those who hurt and those we lost.
In this place, we feel as if our feet touch holy ground. We stand together in one another’s presence, hoping that time will never end. The miracle of togetherness rises above the room and offers itself to the hearts and minds of everyone present.
In this quiet and peaceful room, hope is at the center of the space. We realize our responsibility to tell each loved one’s story. Let it become our life’s purpose to ensure that each person who went before us counts; to speak into the places they would have if given the opportunity. Let them speak through us.
I sat in that room for about an hour, fascinated by what I heard and saw. As I left, I felt a connection to my community that is rich and full of promise. The power of ritual overwhelms the mundane and empowers all of us to move forward, living life to the fullest. Our sorrow from the loss of those we love finds redemption in the community of blood brothers and sisters standing beside us during both good and bad times. In our companionship, we boldly proclaim that hope springs eternal.
I held all of these truths as I rejoined family and friends in the conference that fall day in 1997.
I could name many things that I appreciate about my first National Hemophilia Foundation Annual Conference, but the most special is the time spent remembering our loved ones. Seeing everyone come together with a common purpose leaves participants in awe of the connectedness. I hold these memories close to my heart as we head into March, which is Bleeding Disorders Awareness Month.
Many advances in medicine continue to impact the lives of my blood brothers and sisters. Modern treatment continually improves the quality of life for our community. And through it all, we return to our ritual of meeting one another, which keeps us united.
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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