The Pandemic Strengthened My Connection to the Hemophilia Community

Originally published on Hemophilia News Today by BioNews, Inc.

For most of my 56 years, I’ve felt isolated from the hemophilia community. Before the internet — yes, youngsters, there was such a time — I had very little education about my bleeding disorders and no idea what to expect. I felt no sense of community.

Hemophilia didn’t run in my family, so family members couldn’t relate to my bleeding problems, either. Support groups for girls didn’t exist. The isolation was palpable.

When I was a teenager, I would sneak off to look up von Willebrand disease or hemophilia in a medical encyclopedia at the library. I had a hard time understanding the medical terms and couldn’t relate the information to my symptoms or treatment. I would come away shaking my head and scared for my future instead of feeling more knowledgeable.

The Hemophilia Dark Ages

Through most of the 1980s and ’90s, I felt isolated from my hemophilia treatment center (HTC), too, but for a good reason: They were focused on keeping children and adults alive. During that era, many people with bleeding disorders became infected with HIV/AIDS and hepatitis due to factor products being made from contaminated blood from donors.

The HTC was a depressing place. My heavy periods and bleeds were trivial compared to children battling opportunistic infections caused by AIDS. The hemophilia community’s house was on fire, and I had escaped alive, so the fewer resources I required, the better.

Instead, I volunteered at a summer camp for children living with HIV/AIDS, as most of those children also had hemophilia. I became a foster parent to a child affected by AIDS. I had to give back in some way, and this was my way.

Treatment center programs

Ideally, I would choose to live close to a hemophilia treatment center, a type of comprehensive care center with various specialists and programs dedicated to treating bleeding disorders, but instead, I live two hours away. Many people with hemophilia face long drives to get to their HTC.

Years ago, my hematologist suggested I participate in educational programs and social events offered to those living with hemophilia and von Willebrand disease. But the travel and time required to participate in these events deterred me from participating. Sponsored by pharmaceutical companies and HTCs, a typical program might include a nice dinner and an educational speaker.

Programs moved online

As horrific as it has been, the COVID-19 pandemic did bring one positive change for me and others living in small communities: Programs typically held in person switched to online. I have participated in online tai chi, yoga, art therapy, meditation, and educational events. The wide variety of programs offered has been overwhelming. I have enthusiastically participated and am grateful for the change.

This year, the national bleeding disorder conferences are moving back to an in-person format, although there will still be many things available online. The National Hemophilia Foundation’s Bleeding Disorders Conference will take place from Aug. 25-27 in Houston, Texas, with streaming sessions available. The Hemophilia Federation of America’s Symposium will be held April 20-23 in San Antonio, Texas, with some sessions having an online component.

Little by little, unlike before, I am now feeling more connected. I hope online sessions and other ways to connect virtually will continue. They certainly have one appreciative participant in Florida.

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.