Five quick questions for a hemophilia expert: Danielle Nance, M.D.

1. Why did you become a hematologist?

I first thought of a career as a doctor during the 5^th grade. My own experience in hospitals and with hemophilia as a child made me curious about blood and bleeding. It was a natural fit for me to want to learn more about it. After my son Isaac was born with severe hemophilia, my resolve was renewed. I wanted to be able to “pay it forward” and help create a health care system that would be strong for him when he grew up.

2. What have you learned by approaching hemophilia from multiple dimensions (as a doctor, as a patient and as a mom)?

Sometimes I wonder what it would be like to separate hemophilia from the rest of my life, but there aren’t any vacations from a bleeding disorder! As a young child, my family and I didn’t talk much about hemophilia, and we didn’t share the diagnosis with any except our closest friends and family. As a young woman in college, I was introduced to the National Hemophilia Foundation, and the weight of being alone with hemophilia was suddenly lifted off of me and shouldered by a national community of wonderful and caring people. Since then, hemophilia has become my strength and opened so many doors for me and my family to learn and grow and become whole. My experience as a patient first helped me to anticipate the worries and discomforts of my own patients when I am the one who is providing care. The privilege of being a doctor for me is like a major body hack – I get to learn about all the ways hemophilia and bleeding disorders affect a person, and that helps destroy the fear of hemophilia. I hope that I can help others know hemophilia from many angles and learn how to work with their bodies.

3. What are the things that you do to keep yourself and your patients healthy?

For those of us with a bleeding disorder, getting all of our planned doses of factor is the first priority to maintain our health. The very next thing, is to stay active and find a fun way to exercise.  A person should exercise every day that he or she eats. We all need 30 minutes of activity every day to keep our brains and bodies happy. Finally, finding ways to be kind to ourselves and each other deepens our sense of well being and helps us get through health challenges. 

4. At MicroHealth we use a new concept called “Total Prophylaxis” [which means adding “Prophylactic Monitoring” to “Prophylactic Prescribing”]. Do you think real-time treatment monitoring is important?  

Yes, I do. I read your publication showing that using MicroHealth with your treatment center for monitoring is linked to a 57% reduction in bleeds. This resonates with my own experience using the app as doctor and person with hemophilia. Over the past year, I have been lucky to have a large number of my patients using the MicroHealth app. I have a secure way to connect with my patients, and I enjoy seeing the alerts when patients reach their prophylaxis goals. It’s also very helpful to get notified early when a patient has a bleed, especially when it’s unexpected or it isn’t resolving on time. I don’t have to wait until the next clinic visit to learn about problems they might be having. Instead, I can help out right away. I like the convenience of the MicroHealth layout – logging in is simple, and running the reports takes very little effort. The MicroHealth app has strengthened my relationships with my patients and helps me feel connected to their care in real time. I also think the app has great potential to conduct research. I encourage your team to keep publishing science that helps our community.

5. How do you see the future of hemophilia?   

Hemophilia for my son is so much different than it was for me growing up. He gets bruises sometimes, but he doesn’t miss activities, he isn’t “leaky” and rarely bleeds or oozes from cuts. Other than needing infusions, he basically lives a normal life. As we learn how to use the new treatments for hemophilia, the new extended half-life factors, gene therapy, and the new proteins that change the clotting cascade, I am hopeful that bleeding disorders will simply be a part of life, rather than a daily worry that changes how we approach life. I hope that we will see these treatments spread across the globe, where refrigeration is difficult, or for those who have trouble getting infusions. Then truly, we can say that we have conquered bleeding disorders!

All three are staying healthy and pursuing their dreams.

We hope you do, too!