Carlyle Robinson on the struggles minorities face in finding donor matches — and what you can do to help
By CARLYLE ROBINSON February 3, 2014 9:26AM
Updated: March 4, 2014 6:03AM
My name is Carlyle Robinson. I am a husband, a father, a die-hard Chicago Bears fan, a hardworking hotel manager at the Hard Rock Hotel Chicago and a Harley-Davidson enthusiast, and I live with Myelodysplastic Syndrome (MDS). The day I discovered I have this common yet unfamiliar disease changed me and my family forever. When you have MDS, it not only affects you, but also the people you love. I find comfort in the fact that I am not alone in this battle, but it hurts me to know my family has to suffer alongside me.
Myelodysplastic Syndrome is a blood condition affecting 19,000 people per year in the United States that causes ineffective production of blood cells. As a result, I’ve developed anemia and have had frequent blood transfusions over the past few months. My ultimate chance at survival is an immediate bone marrow transplant. The biggest difficulty isn’t the pain I will inevitably endure or the time away from my family and work, but rather the daunting task of finding a 100 percent donor match. As an African American, my chances of finding one decreases significantly. According to Delete Blood Cancer DKMS, the best chance of finding a genetic match lies with those of a similar racial or ethnic backgrounds. Just 30 percent of listed donors are members of ethnic minorities, and of that percentage, African Americans only make up 7 percent.
That’s why this Black History Month, I want to reach out to the African-American community and encourage people to make personal health care a priority. On Friday, the Hard Rock Hotel Chicago, in partnership with Delete Blood Cancer DKMS, is hosting the property’s first-ever bone marrow drive. The drive gives me an opportunity to find a matching donor, but more importantly, it raises awareness about MDS and the struggles minorities face in finding donor matches. The more African-American donors who volunteer and take action, the higher the chance that all African-American patients will find lifesaving matches.
But this is not just about me; this is not even just about MDS. It is about taking the first step to better health care in minority communities. Don’t delay getting annual physicals and necessary doctor visits. If you do find yourself in my shoes, with a condition looming like a dark cloud over you and your family, don’t let it control your life.
Every day when I wake up, I tell myself I have two choices: I can accept what I have and move forward, or I can dwell on it. Instead, I choose to live. I have an amazing family and the most generous co-workers in the world. I will not let this condition tear me down, and I will, one day, get back on my Harley. Together, let’s eliminate blood cancer and take the necessary steps toward better health.
The Hard Rock Hotel Chicago’s donor drive is on Friday in the Fender Ballroom from 9 a.m. to 6 p.m. For more information, visit Hardrockhotelchicago.com/carlyle.