Welcome to Doctors’ Notes, our newest contribution from Urban Health correspondents and husband and wife physicians Dr. Rob and Dr. Karla Robinson. The dynamic duo will be fielding questions about health, as it relates to African Americans. Please feel free to send them questions via firstname.lastname@example.org. We promise to keep it anonymous.
There are more than 3 million people in this country living with a bleeding disorder—a chronic illness that prevents the blood from clotting normally. This can result in excessive bleeding after injury, surgery or trauma and can even be fatal if not treated effectively. Although millions are affected, many still don’t know much about bleeding disorders, and one man is on a mission to change that.
Val Bias, CEO of the National Hemophilia Foundation (NHF) is committed to making the community aware of the effects of hemophilia—the chronic bleeding disorder he has battled since infancy. Although his journey with hemophilia has not been easy, Bias has managed to beat the odds and continues the fight to raise awareness about bleeding disorders.
After Bias acquired Hepatitis B, Hepatitis C, and HIV from various blood transfusions (an often necessary treatment for hemophilia), in 1992 his first wife passed away due to HIV-related complications. Since then, he has been committed to doing the work he does today to educate the community. Through an exciting new initiative, the Red Tie Challenge, Val and the NHF continue the fight for more research, education, legislation, and funding for those living with bleeding disorders.
JET: What is hemophilia and what do people living with it experience?
Val Bias: It is a genetic bleeding disorder generally passed from mother to son on the X chromosome. Rarely, there will be a spontaneous mutation that will cause a girl to have it. But mostly, the population is boys.
Bleeding episodes can be as painful as breaking a bone. For hemophilia, most of the bleeding is into the joints: knees, ankles, elbows, shoulders, and hips. Each time you bleed into that area, it deteriorates a little bit more. I’ve just had an ankle replacement, a knee replacement 10 years ago, and another knee replacement coming this fall.
JET: How did you come to know you had hemophilia and what was life like growing up with it?
Val Bias: There was a history of hemophilia in my family. When I came out of my mother’s womb, the forceps put a bruise on my forehead, so they knew I had a bleeding disorder at that point. When I was born, there was no effective treatment for hemophilia. My mom and aunts were very cautious and tried to limit my activity without limiting my enthusiasm for play. They did a good job; as a child I didn’t have any major injuries until the 3rd grade.
JET: You’ve been living with hemophilia long enough to see all of the medical advancements. How have the newer therapies impacted your journey?
Val Bias: It’s been nothing short of a miracle. Going from whole blood transfusions as a child to fresh frozen plasma, to clotting factor which can be done at home has been a real game changer for people with hemophilia. That meant you could go to school, have a job, have a family and treat your bleeding disorder at home without having to go to the hospital constantly.
JET: As a result of your hemophilia treatment, you have been exposed to other chronic diseases. Can you explain how that has affected you?
Val Bias: As much as blood products have allowed us to live normal lives, they have also come with their challenges. In the 1970s we knew the risk of being exposed to Hepatitis B, which I contracted in 6th grade. In the 1980s we were exposed to HIV through the contaminated blood supply. There are 20,000 people with classic hemophilia, and roughly 10,000 were affected by HIV in the 1980s, including spouses and their children. In the 1990s, we were also affected by Hepatitis C. Fortunately, the new drugs for Hepatitis C have been effective in curing it. I was cured in 2014.
JET: Can you tell us about your new initiative the Red Tie Challenge?
Val Bias: We applied to make March Bleeding Disorders Awareness Month and started the Red Tie Challenge. We ask everyone to take a red tie and tie it anyway you like, take a picture and post it on social media and label it #RedTieChallenge to help us raise awareness about bleeding disorders. We’re very excited about the response we’ve been receiving.
JET: How can the community get involved and join in the fight with those living with bleeding disorders?
Val Bias: You can always make a donation to our National Hemophilia Foundation and we appreciate the support. For the African American community, it is difficult to embrace the medical community, but I would ask that people open their hearts and minds to medical research and even participating by giving blood or tissue, clinical trials, or surveys. All of it helps.
JET: Where can people learn more about hemophilia and other bleeding disorders?
Val Bias: You can visit www.hemophilia.org, and you can look at the Steps for Living tab for more information on bleeding disorders.
It’s a health thing…we’ve got to understand!
About the Doctors:
Dr. Karla and Dr. Rob are the founders of Urban Housecall, a multimedia health and wellness resource, and also hosts of the Urban Housecall Radio Show. For more from the doctors, visit their website at www.urbanhousecall.com, like them on Facebook, and follow them on Twitter @urbanhousecall!