I’ve spent the last 24 years working in developing countries, helping families and nonprofits gain access to better healthcare for hemophilia. The story below touched my heart as I have been to the Philippines, and we now are partners in progress for better hemophilia care. Read James’s story below to see how his life changed with proper treatment!
Submitted by Takeda
This is James experience, but your experience may be different.
Learning, Living, and Growing
Born and raised in a rural village in the Philippines, James grew up in a careful household. Losing one brother to complications from hemophilia at a young age and living far away from any access to proper healthcare, his parents taught him to be cautious throughout his childhood. “My parents would limit my activities a lot. They loved me, but wanted to make sure I couldn’t hurt myself,” James recalls. When James did have a bleeding episode, the family would have to travel miles and miles to the nearest hospital to get him a blood transfusion.
James and his family moved to Los Angeles when he was 16 for one reason: his hemophilia. For the first time in his life, James learned more about hemophilia and the importance of maintaining factor levels. He began factor replacement therapy after his care team recommended a prophylaxis regimen.*
Learning and connecting with his hematologist, James realized his hemophilia was only a part of him, not who he was. “[He] helped me change my perception of hemophilia, my understanding of hemophilia. It gave me a little bit more confidence.”
*James’ regimen was based on his needs as determined by him and his care team. This was his experience, but your experience may be different.
Caring and Giving
Through surgeries, physical activities, and personal adventures, James found support in his wife Carla along with his care team. Having gone through surgery twice, he learned that preparedness is key. “Before both procedures there was a lot of discussion around how I’d be kept at a sufficient factor level. And for me, we decided to use factor prophylaxis during both surgeries, so they could continue to track my levels.” James could trust that his care team had his back in the operating room and Carla was there to help during recovery. “I wanted to be active again, to go out with her like we did before the surgeries. She was a big part of my recovery,” James remembers.
Post-surgery, Carla assumed the role of caregiver and ran with it. She partnered with James’ care team, including his physical therapist, planned his recovery, and learned how to help administer factor through a port.
Since recovering from his surgeries, James has been able to maintain an active lifestyle. Once he received the green light from his hematologist, James made a plan to stay fit. Through his preparedness and the support from his care team, James has been able to participate in bike events, including a charity ride with his friends.
“Crossing the finish line was such a great moment… tiring, but also rewarding. I was so proud of myself.” To James, crossing the finish line meant more than just finishing the ride. It was also a testament to the dedication of his care team and of Carla. Having their support, he learned he could trust his body again.
Today, James remains active and continues his adventures with Carla as they travel to many parts of the world. Together, they stay active in their local hemophilia community, sharing their story of recovery and resilience.
Adapted from Hello Factor magazine.
Visit bleedingdisorders.com to read more about patients like James and their stories.
Any factor and physical activity regimens mentioned were developed for James only after consultation with his care team, and may not be appropriate for all patients. Your factor regimen may be individualized after consultation with your care team.
This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the bleedingdisorders.com website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.
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