Nikole Scappe in sunglasses in front of a waterfront

Meet NBDF Staffer Nikole Scappe

The foundation’s manager of education, who’s also a lived experience expert, shares her advice.

Nikole Scappe came to work for the National Bleeding Disorders Foundation (NBDF) in April 2018 and today serves as its manager of education. But her connection to NBDF began before that, as a member of its National Youth Leadership Institute (NYLI). Back then, Scappe was an intern for the education department. “She’s clearly very passionate and committed, which shines through in the energy she brings to her work with the community,” says NBDF Vice President of Education Kate Nammacher.

Below, Scappe shares her advice for others who, like her, are living with von Willebrand disease (VWD).

What do you do to stay healthy as you manage your bleeding disorder?

While living and thriving with VWD, I prioritize both my physical and mental well-being by engaging in strength training three times a week and incorporating some form of movement on other days.

Ensuring that I take my bleeding disorder medication regularly helps me feel my best and prevents any unexpected bleeding episodes. I also make it a priority to participate in activities like bowling or rock climbing on nontreatment days. As a precautionary measure, I infuse to avoid any potential bleeding issues.

Mental health is also extremely important in managing my bleeding disorder. When it comes to my mental health, I prioritize spending quality time with my family and friends. Additionally, incorporating regular workouts into my routine significantly contributes to supporting my mental well-being.

During any travel times, whether for work or leisure, I always bring along my bleeding disorder medication, accompanied by a medical travel letter from my hemophilia treatment center. I also carry infusion supplies in case of any emergencies.

What’s been the biggest challenge in managing your bleeding disorder, and how have you addressed it?

Accessing the appropriate factor medication has been my biggest challenge. I encountered resistance when I was recommended a medication that didn’t suit my needs. Taking matters into my own hands, I became my own advocate. I meticulously documented my frequent bleeding episodes and captured them with photographs. Presenting this detailed information at my hemophilia treatment center (HTC) was pivotal in advocating for my case and ultimately enabled me to access the factor medication that was most effective for me.

What advice do you have for someone who is newly diagnosed with VWD?

Actively ask questions and seek connections within the bleeding disorders community, including your HTC, local chapter, and other affected individuals and their support networks. It’s also crucial to engage with your local chapter and meet other affected community members.

In addition, familiarize yourself with the VWD guidelines for diagnosis and management. They can provide valuable insights once you’ve gained an understanding of your specific condition. These guidelines also offer essential information regarding the treatment of von Willebrand disease, including strategies for accessing medication. They ensure that in case of bleeding episodes, you’ll have access to factor or other medications tailored to your needs.

Lastly, visit the National Bleeding Disorders Foundation’s website for educational materials and events that can support you throughout your journey. There, you’ll find one of my go-to documents, the VWD Toolkit for Women, Girls, and Individuals with the Potential to Menstruate. There is one for men and boys, too.