Eight years ago, Luke Miller might have been sent to the hospital after colliding with another player on the basketball court. This time, although he was a little worried, he went home with his parents instead of leaving in an ambulance.

Luke, 13, of Mars, was diagnosed with hemophilia when he was about 6 months old. The rare disorder prevents a person’s blood from clotting in the typical way because it doesn’t have enough blood-clotting proteins, also known as clotting factors, which can lead to a person bleeding for longer than someone without the disorder.

Since 2018, Luke has taken medicine via IV that helps bridge the gap between two clotting factors, which has prevented injuries on the court from ending up as hospitalizations.

Luke said he still gets a little alarmed when he takes a spill, but the worry about his collision on the basketball court was short-lived.

“I was worried when it happened,” he said. “But after a little bit, once I realize nothing is really happening, then I don’t really worry about it that much.”

March is Bleeding Disorders Awareness Month, an awareness campaign promoted by the Western Pennsylvania Bleeding Disorders Foundation and other organizations like it. On Thursday, Feb. 26, Luke and his dad, Scott Miller, accepted a proclamation from the Butler County commissioners recognizing the month and the cause behind it.

Janet Barone, the foundation’s program director, said that although awareness and treatment of bleeding disorders has grown in the past few years, many people still go years undiagnosed. Spreading information about diseases like hemophilia could lead people to be evaluated, preventing complications that could be caused by excessive bleeding, she said.

“On average it takes 16 years from the onset of symptoms for a female to be diagnosed with a bleeding disorder. So we’re trying to spread awareness to close that gap so women can receive care sooner,” Barone said.

“We’re getting into as many school districts as possible in Western Pennsylvania, we’re sending them literature that lists the signs and symptoms of bleeding disorders so that they can familiarize themselves.”

Having a son diagnosed with hemophilia at 6 months old has led Miller and the rest of Luke’s family to become familiar with its symptoms and effects, and also to become involved with the Western Pennsylvania Bleeding Disorders Foundation. Miller said Luke’s treatment has taken place pretty much entirely at UPMC Children’s Hospital of Pittsburgh.

Miller said it took a few trips to the emergency room for Luke to be diagnosed, and he was misdiagnosed with another disease before doctors landed on hemophilia. Luke’s original physician, Dr. Margaret V. Ragni, and his current physician, Dr. Frederico Xavier, taught the family a lot about hemophilia and how to help Luke live a typical life with the condition.

With no family history and little knowledge about bleeding disorders, the Millers relied on Children’s Hospital and the foundation for information and support.

Luke still goes to the Hemophilia Center of Western Pennsylvania every six months and gets blood drawn. Luke’s doctors also helped the family make the decision to use a new medicine that helps Luke’s blood clot, preventing excessive bleeding. He takes the medicine weekly.

“He’s missing Factor VIII, so when the cascade for proteins for clotting happens, he would go to VII and then nothing would come at VIII,” Miller said. “This new injection doesn’t use VIII — it’s a bridge from VII to IX — so it skips VIII and goes over it and lets him clot. For him it works really well.”

Since 2018, when Luke gained access to the medicine, he has not been hospitalized for bleeding. Luke used to get bleeds a lot in his youth, but he and his father said he lives a pretty typical life, even with hemophilia. It’s his medicine that has helped make that happen.

Because he doesn’t remember a time before having his condition, Luke said he feels the same as his classmates.

“It’s not really much different,” Luke said. “The only thing I wish I could do that I can’t is play football, and if I didn’t have hemophilia, I would. Besides that, there’s really nothing.”

However, the hospital visits and medicine make hemophilia an expensive condition. Miller said programs like the Affordable Care Act have helped pay for medicine. The foundation also has initiatives that help connect patients and their families to health care.

The foundation also offers support groups and activities that help show parents and patients they are not the only ones living with a bleeding disorder.

“We offer education programs and, for families that have especially a young child, a young newborn, we offer a new parent network program, and we partner with the Hemophilia Center of Western Pennsylvania on that,” Barone said. “Education, and some social events too, so families can meet each other, build their own peer networks and know that they’re not on this journey alone.”

Miller said there are “cures” for bleeding disorders like hemophilia that prevent regular bleeds from being an issue. But the cures are “10 times more unaffordable” than the treatments for hemophilia, Miller said.

Luke could decide one day whether to get a treatment that would get rid of many of hemophilia’s effects, but Miller said there would still be some symptoms.

“A cure would turn him into a mild hemophiliac, which day-to-day would be fine, but surgeries he would need more help with,” Miller said. “He can make that decision when he’s older.”

Barone said pushing for awareness about bleeding disorders and their symptoms remains a priority for the Western Pennsylvania Bleeding Disorders Foundation.

She said the foundation has distributed period packs and nosebleed kits to school nurses, who are sometimes the first ones to recognize symptoms of a potential bleeding disorder in youths. The results of these distributions has already made a difference, Barone said.

“We did a survey at the end of this past school year, and of the nurses who participated with the nosebleed kits, 10 kids that they know of went on to seek evaluation, and one was diagnosed with a bleeding disorder,” Barone said. “With the period packs, eight girls went on to receive evaluation, and three of them were diagnosed.”

Miller said Luke doesn’t often talk about his hemophilia with others, but wanted to help raise some awareness of it through accepting the proclamation alongside the bleeding disorders foundation.

He indicated it is possible to get rid of some of the risks associated with the condition with a little bit of treatment.

“The last one I got was in, I think, fourth grade,” Luke said. “I haven’t gotten one since.”