Ryan was diagnosed with severe hemophilia A when he was 9 months old. Today, in his 40's, he lives in Maryland, near Baltimore, with his wife and two children. “I guess you could say that treatment for hemophilia and I matured right alongside each other. Since I'm considered part of the ‘older generation’ of people with a bleeding disorder, and because I work with a specialty pharmacy serving people who have hemophilia, a lot of people ask me questions on the state of treatment. It has really evolved! I'm much happier for the younger generation and people coming of age today because they've been doing FVIII prophylaxis since they were very young – with products like NUWIQ ® – and it's provided them with much better lives in the long run.”
Growing up, Ryan took various kinds of treatments to manage his bleeds but wasn't really satisfied until he discovered FVIII therapy. “I've become a big believer in FVIII. It is very safe, very effective, and there are different variations to fit everyone's needs.” Today Ryan is a strong advocate for FVIII therapy as the standard of care in hemophilia A, especially as the use of non–FVIII medications increases. “I see that some doctors and HTCs are pushing non–FVIII treatment. I wonder about the risks. Can you develop a clot? How will your system react? I haven't really gotten straight answers to these questions. And as someone who works in the bleeding disorders community, I've seen the non–FVIII products first–hand. I'm not really comfortable with switching from a FVIII product.” Ryan suggests that if you're being advised to switch medications, you do your own research, and get information from sources you trust.
“I am very concerned about what goes into my body, so a product based on a human cell line was of particular interest to me. It just seems more natural.” Ryan learned about NUWIQ through his work, and he was impressed. He switched to NUWIQ prophylaxis and it has been a good fit for him. Currently Ryan takes NUWIQ 3 times per week, self–infusing at home. “I could probably go to 2 times a week but I'm pretty active. I prefer the extra coverage, and I'm pretty much a pro at doing my own infusions!” Since switching to NUWIQ, Ryan reports that he has had zero bleeds. “I also feel better. With NUWIQ, I've been able to go back to the gym and exercise more.”
Ryan has done extensive outreach with the hemophilia community for over 15 years, having served as VP for Hemophilia Foundation of Maryland as well as through his work with a specialty pharmacy. His advice to patients? “Don't let your condition hold you back, but always keep safety in mind. Every product has pluses and minuses, and it may not work in your body the same way as another. You are in charge of your body, your treatment, and your life.”
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.