(BPT) - Whether sea kayaking off the San Juan Islands or hitting the ski slopes in Utah, 20-year-old Myles Ganley takes any chance he can to explore the outdoors. And he does so while managing severe hemophilia B, a rare inherited bleeding disorder that affects the blood's ability to clot.1
'I've always loved adventure travel because it's not only exciting, but it also pushes me to challenge myself and builds my confidence,' explains Myles. 'I don't let my hemophilia become a limiting factor in pursuing what I love to do.'
Hemophilia certainly doesn't hold Myles back. He frequently participates in Leading X programs, week-long adventure trips run by GutMonkey. These trips offer the bleeding disorders community a way to learn outdoor living and leadership skills, develop personal responsibility, and form community bonds. It was through Leading X that Myles recently went to the San Juan Islands in northwestern Washington on a five-day camping trip, something he never thought would have been possible.
Having hemophilia does mean that Myles must take certain precautions and prepare for the unexpected when away from home - like the time he had to self-infuse while kayaking in the middle of the ocean. Since his diagnosis, Myles has been treated with BeneFIX® Coagulation Factor IX (Recombinant), an injectable medicine used to help control and prevent bleeding in people with hemophilia B. Before traveling, he works with his hemophilia treatment center to determine the best dosing schedule for the trip and he always carries extra factor. Myles also discusses proper injection techniques as well as potential side effects that he might encounter such as nausea or injection site reactions, and how he could manage these side effects when he is on the go.
To help Myles and others with hemophilia, Pfizer Hemophilia will introduce the BeneFIX Travel kit. The travel-friendly kit combines the Rapid Reconstitution (R2) Kit, which conveniently allows patients on the go to infuse with a simple and short preparation process, along with a sharps container, infusion mat, tourniquet and educational materials all in one.
Myles hopes to inspire others in the community by sharing his passion for outdoor activities. He works as a counselor at a hemophilia camp and is very involved with his local National Hemophilia Foundation chapter. According to Myles, 'if there's something you want to do, you should sit down and make a plan to do it.'
For tips on traveling with hemophilia, visit the Pfizer-supported educational site, StepsForLiving.com. For more information about BeneFIX, please visit www.benefix.com.
For more information about the Leading X programs, which are supported by Pfizer Hemophilia, visit www.gutmonkey.com.
BeneFIX Coagulation Factor IX (Recombinant) is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease.
BeneFIX is NOT used to treat hemophilia A.
IMPORTANT SAFETY INFORMATION FOR BENEFIX
- BeneFIX is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including hamster protein
- Call your health care provider right away if your bleeding is not controlled after using BeneFIX
- Allergic reactions may occur with BeneFIX. Call your health care provider or get emergency treatment right away if you have any of the following symptoms: wheezing, difficulty breathing, chest tightness, your lips and gums turning blue, fast heartbeat, facial swelling, faintness, rash or hives
- Your body can make antibodies, called 'inhibitors,' which may interfere with the effectiveness of BeneFIX
- If you have risk factors for developing blood clots, such as a venous catheter through which BeneFIX is given by continuous infusion, BeneFIX may increase the risk of abnormal blood clots. The safety and efficacy of BeneFIX administration by continuous infusion have not been established
- Some common side effects of BeneFIX are nausea, injection site reaction, injection site pain, headache, dizziness and rash
Visit http://labeling.pfizer.com/showlabeling.aspx?id=492, to see full Prescribing Information for BeneFIX.
You are encouraged to report negative side effects of prescription drugs to the FDA.
Visit http://www.fda.gov/medwatch, or call 1-800-FDA-1088.
1National Heart Lung and Blood Institute. 'What is Hemophilia.' Accessed 23 March 2015. Available at http://www.nhlbi.nih.gov/health/health-topics/topics/hemophilia/