BATON ROUGE, LA (WAFB) - It's a disorder that only affects a couple hundred people in Louisiana, but that doesn't mean you shouldn't care. That's the message from an unlikely advocate for people with Hemophilia.
"Me, I have the factor VIII deficiency, so I'm missing one of those strings (of protein)," 13-year-old Sean Noel explained to a biology class at St. Paul's School in Covington.
The Mandeville middle-schooler speaks to anyone who will listen.
"A lot of hospitals don't know how to treat hemophilia as well," he added.
Diagnosed at age two, Noel has a mild form of the rare genetic blood disorder that affects around 20,000 Americans. A missing protein prevents blood from properly clotting, meaning a small cut can bleed uncontrollably for days. The biggest threat is internal bleeding at joints and muscles. Severe hemophiliacs require daily injections of their missing protein. The 13 various types are known as "factors."
Injections, covered partially by insurance, cost around $3,000 per vial, making Hemophilia one of the costliest chronic diseases in the U.S.
"There's a voice that is unheard by many, and the hemophilia community needs someone to advocate who they are, what their needs are," Noel said.
Sean wants to be that voice. He spends his free time talking to nursing classes, presenting in city council chambers and even appearing on the stage of the National Hemophilia Foundation.
The 1980s AIDS epidemic killed thousands of hemophiliacs, meaning there are very few today over age 40.
"We're the new generation of hemophiliacs, and we just have the advent of manufactured factor, so I guess for the most part we're just fortunate that we have that liberty in our lives," Noel said.
Kids with hemophilia avoid contact sports, so every summer Sean raises money to send them to a medically-staffed summer camp where they can play without fear. Camp Wounded Knee is a confidence-building experience for kids who often hear the word "no."
"People think that because they have this disease that it's going to hold them back, but that is not the case at all," Noel said.
As for himself, Sean is currently deciding between the Air Force, the Army Corps of Engineers or law school. There's at least one thing he knows for sure.
"I want to advocate for the rest of my life," he said. "I'm only in 7th grade. I've still got a lot of time to make up my mind."