Skylar: Hemophilia Treatment

Skylar is an active teenager who runs on his school's cross-country team. He also has hemophilia, a hereditary blood disorder. As a toddler, he landed in the emergency room 25 times in two years. Now, he says, "Mostly it's just an inconvenience."
Thanks to early and diligent treatment, his disorder doesn't stop him from running. "I have been lucky enough to have been treated all my life, so I haven't had a whole lot of serious problems," Skylar said.
"Hemophilia is not in the forefront for us anymore," Skylar's mom said. "It is a fact of life and we contend with it, but it's really no longer the defining feature. I think a lot of the credit for that goes to the treatment center for the types of support they've provided to us."
Skylar needs to inject himself with the clotting protein that his blood is missing, a process called infusion. He has to resupply his body every couple of days so he can avoid serious bleeding should he be injured. Keeping up with his infusions means that Skylar can continue to run with his team.
The risk of bleeding injuries is low, he says, but he makes sure to infuse before every race, as well as stretching and warming up properly. Hemophilia patients are vulnerable to bleeding in the joints, which can lead to arthritis.
Until the age of ten, Skylar took his infusions through a port in his chest. Over the next couple of years, he learned how to do the injections himself. "It is a huge step for independence because you don't always have to be relying on your parents to take the infusions," he said.
Child therapists at CHaD helped him become psychologically ready to transition to what has become a largely independent infusion process. It's become routine, so Skylar likes to make it fun by finding interesting places to do it. "This summer, I hiked a lot on the Long Trail in the Green Mountains, and I did one on the top of Glastonbury Mountain, which was kinda cool," he said.
"He doesn't feel confined by his disease, and he's physically very healthy," said Skylar's mom. "He's very strong."
Twice a year, he attends a hemophilia clinic (a series of group appointments with specialists) at Dartmouth-Hitchcock. "I think it's nice for the smaller kids to interact with the older kids, and also to hear about what they're doing," said Skylar's doctor, Julie Kim. "What is it going to be like? What goals and dreams do they have? When you have older people there with hemophilia, you get a sense that the world is wide open."
"Skylar is an amazing patient," said Dr. Kim. "From the get-go, he and his family have been very proactive in managing his disorder. He has not let it interfere with how he runs his life and how he participates in life. He's maintained a very positive attitude. That positive attitude has helped him understand his disease and manage it and try to control this. I expect him to live a very successful, full and active life."
"I am extremely proud of Skylar," said Skylar's mom. "He impresses me every day."
For more information about the pediatric hemophilia program at Dartmouth-Hitchcock, visit bit.ly/dh_hemo.