Although Edgar was born with hemophilia, his condition was not diagnosed until age 10. Prior to this, he suffered bleeds associated with “routine” childhood scraped knees and elbows. After a hernia surgery he bled for over 12 hours. Still the medical professionals did not think of hemophilia – they attributed the bleeds to having hit a nerve or vein during treatments. “I have found that awareness, understanding, and treatment related to hemophilia vary tremendously based on geography. For example, I was born in the US Virgin Islands. Although I have had hemophilia since birth, testing was not really available, and knowledge of the disease was very limited. So my condition really wasn't addressed.” When Hurricane Hugo destroyed his home in 1989, his family relocated to Florida, where he continued to endure spontaneous bleeds. After a debilitating ankle bleed, his hemophilia was finally diagnosed. “It was a traumatic experience. I was ‘one in a million’ – the kid with a bleeding disorder with no known family history. What to do now?” As an adult and Factor My Way Patient Experience Manager, Edgar has observed that location can still exert a tremendous impact on those with the disease. It can affect availability of information, access to treatment, resources, lifestyles, disease management — even attitudes to types of medication prescribed. “It used to all depend on geography. Fortunately, today the internet is a great tool, making support, information, and connection available to everyone with a bleeding disorder, regardless of where they live. That's a big improvement!”
After diagnosis, Edgar spent the ages of 10–23 rotating between two infusion products derived from hamster cell lines, based on vial size availability. He was still having 8–10 breakthrough bleeds a year. Edgar has a wife and two kids, and he wanted to be able to be there for them, without the intrusion of spontaneous bleeds. That motivated him to begin researching other options. “I'm the kind of guy that likes to have done all the research before I make a decision – that applies to everything – toasters, cars, and hemophilia treatments. So I took a deep dive into the science. I would describe most treatment decisions as being based on what I call the “Wizard of Oz Model” – here is your medication, take it, and don't look behind the curtain. In reality, so little is known about bleeding disorders and their treatment that we are really just ten years out of the stone age. Many myths have been debunked over time: females do get hemophilia, males can have von Willebrand disease, and spontaneous mutation is not exceedingly rare – it actually occurs in 30% of families. I believe that asking questions is essential. It's your body, and your treatment.”
After months of research, Edgar decided that NUWIQ® was worth a try. At the time it was a new medication, based on a human–derived cell line produced in a novel manufacturing process, without chemical modification or fusion with any other protein. His physician, who is also a research M.D., was willing to try as well. Because Edgar likes to explore all the angles, he underwent pharmacokinetic (PK) profiling to help arrive at the best dosing and frequency for his needs. Edgar's research paid off. He has not had any spontaneous bleeds in his year and a half on NUWIQ. “I am a guy, and sometimes we do risky things, like jumping off a roof after hanging holiday lights. So yes, I have had a few minor bleeds. But I have not had any bleeds that I myself have not caused. I am 100% diligent with adherence and prophylaxis. That is critical to reducing or eliminating break–through bleeds.”
Edgar believes in research, education, and information sharing. He puts his beliefs into practice as an Octapharma Patient Experience Manager, as a hemophilia patient himself, and as a member of the larger bleeding disorders community. “You have to know what is going into your body. Things evolve constantly. It's important to get current, detailed information. And to pass along what you learn. I am an avid reader of product sites, marketing information, news sites, and hemophilia–specific sites. I participate in social media groups to stay informed and to help others. I teach people how to do research and interpret what they find. I have a group of friends committed to sharing what we learn in our own email group. I would encourage anybody with hemophilia to stay tuned in to new advancements in treatment and to take charge of their own disease management.” Take it from one who knows.
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.
Este material representa la experiencia individual de un paciente o cuidador que vive con un trastorno hemorrágico
Este contenido no tiene como objetivo reemplazar el consejo, diagnóstico o tratamiento médico profesional. Consulte con el médico de su Centro de Tratamiento para la Hemofilia local u otro proveedor de atención médica si tiene preguntas relacionadas con el manejo de los trastornos hemorrágicos.