As I prepare to ride a bike for 700 miles over the next seven days—for the third year in a row—I am both nervous and excited. Nervous because I know the ride is challenging. Excited because I am passionate about spreading awareness of hemophagocytic lymphohistiocytosis, more commonly referred to as HLH.
This week I am participating in 700 Miles to Hope, a bike ride started five years ago to honor young children who have lost their lives to this wretched immune deficiency disease. It serves to bring much-needed attention to the condition, because not enough people know what HLH is, how to diagnose it, and how to treat it.
It might be hard to imagine a disease that’s worse than cancer. But, sadly, HLH is worse.
It comes on quickly. Its initial symptoms are often deceiving. And the longer it goes undiagnosed, the more havoc it can wreak on the body, spreading destruction at precisely the time the body needs to be fighting.
I cannot say this enough: More people need to know about HLH. Awareness and research have led to a significant improvement in outcomes in children with cancer. My hope and my aim are to help bring such awareness to HLH, so we can accomplish similar improvements in treating this disease. The simple fact is that more research needs to be done on HLH, so we can diagnose it early and treat it effectively.
Some of the children who are diagnosed with HLH don’t survive. Witnessing a family lose their child is the worst part of my job. It is not only devastating for the families, but it affects me personally too. That’s why I’m riding again this year. Even though I haven’t had as much time to train this summer. Even though I am older this year and am unsure of how my body will handle this ride. Even though there are hills and crashes and deep, powerful emotions that we’re sure to encounter.
Many children who have HLH need a bone marrow transplant as part of their treatment. While I am riding this week, I ask you to please take action to become a bone marrow donor. Visit Be The Match to get started. It’s rather easy: Request a kit, a cotton swab in your cheek, a bit of simple paperwork and send it back. That’s it—and you quite literally could save a life.
Please, also spread the word. Learn about HLH. Talk about HLH. Think of research and where it has brought us. Learn why the other riders are riding. Share this blog post. Create a buzz. And rest assured that I’ll be doing all of these same things as I pedal my way from Jackson, Mississippi, back home to Cincinnati over the next seven days. Thank you for joining me.