When he was six months old, Seth was diagnosed with hemophilia A and cancer at the same time. “My parents had never heard of hemophilia and they reacted very negatively. Their attention was focused on cancer surgery and chemo – they thought the hemophilia could wait. But of course, they had to deal with the hemophilia in order to proceed with the surgery. It was a terrible, whirlwind day for them.” From the outset, Seth was treated with a FVIII recombinant therapy prophylactically. At 11 months old, Seth had a second bout with cancer and returned to the hospital for another surgery, during which his spinal cord was accidentally cut. As a result, although now cancer–free, Seth has been a T2 paraplegic since the age of one, using a manual wheelchair for mobility. But Seth hasn't let hemophilia or paraplegia slow him down. “I believe that obstacles are just speed bumps in the path of life. It may take a little bit of extra effort to maneuver over them, but they should never be a roadblock. Put forth your maximum effort and think positive, and good things will come of it.” And that's just what he did.
As a child, treatment decisions of all kinds were left to his parents and his medical team. By age 11 he was handling his own infusions. He always took adherence very seriously. “I was really getting into sports and I needed to stay as healthy as possible. I had to make a deal with my Hemophilia Treatment Center that I could only play sports if I was compliant and maintained constant treatment. That was all the motivation I needed.” In college Seth transitioned to managing his own treatment. “It can be difficult for college students – suddenly managing your own product ordering and infusion scheduling while juggling classes, extracurricular activities, and friends. I was earning a bachelor's degree in Mechanical/Biomedical Engineering at the University of Central Florida, and I was very busy. In my freshman year I had more breakthrough bleeding than in the past. By my sophomore year I knuckled down and made treatment management and compliance priorities.” In 2015 he became interested in NUWIQ®. He knew that it was at the forefront of new factors coming out and derived from a human cell line, which seemed more natural to him. He wanted to take fewer doses every week and believed that NUWIQ would allow him to drop from three to two. And he was changing his health insurance so he would be changing product shortly anyway. “It was a good move for me and I'm very happy with my current regimen. Plus, I love being a Patient Educator for Octapharma.”
Seth has always been determined to lead an active and healthy life despite his childhood diagnosis. An avid sports enthusiast, Seth is a Team USA Paralympic bronze medalist and plays for the Denver Rolling Nuggets basketball team as part of the National Wheelchair Basketball Association (NWBA). He also coaches the Denver Jr. Rolling Nuggets team. Never one to take “no” for an answer, Seth has learned how to team up with his health care providers to proactively manage prophylactic treatments in order to stay healthy and ready to compete in demanding team sports, to pursue his career as a New Product Engineer for a medical device manufacturer, and to serve as a Patient Educator for Octapharma.
As an Octapharma Patient Educator, Seth meets with individuals and groups, participates in events, and makes several presentations a year. His specific areas of interest are how to rise to life's challenges, turning “you can't” into “you can”, developing a great support system along the way, providing the tools and resources needed to live an active life regardless of situation, and teaching “drills and skills” for the bleeding disorders community, combining basketball and games with the importance of maintaining a solid health care regimen. “I help people understand that they can have just as good a life as anyone. It is a matter of seeing beyond limitations.”
This material represents individual patient and/or caregiver experience living with a bleeding disorder.
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult with your local Hemophilia Treatment Center physician or other health care provider if you have any questions related to management of bleeding disorders.