KAYLA GREGORY

This Spotlight appeared in our January 2025 newsletter.

How did you connect with the Foundation? 

My family was introduced to VWD Connect through a longtime social worker at our local HTC. After attending several other conferences including NOW and NHF, my parents were excited to experience something more focused on sVWD and my unique journey.

How old were you when your family joined VWD Connect? Do you remember your first conference?

I was 12 years old when my family first joined. One memory that stands out is participating in the clicker surveys, where I saw real-life statistics about my disorder for the first time. I also remember meeting people at completely different stages of their lives, but all connected by a shared experience with VWD. It was a unifying and inspiring experience, even if I didn’t fully understand the significance at the time.

Where do you live? What would you recommend a first-time visitor do?

I live in Northern California. I highly recommend that first-time visitors explore all the awesome nature and state parks in the area, especially Lake Tahoe!

How do you think growing up with your family being Foundation members has affected your experience growing up with sVWD?

I feel so lucky that my family found the Foundation so early in my sVWD journey. It gave us support and understanding that we couldn’t find in the general medical world. For me, it’s been empowering to connect with people who truly know what living with a severe bleeding disorder is like — something even my closest friends can’t fully grasp. This experience has strengthened my confidence and provided me with a second family that holds a special place in my heart.

As an athlete, do you have any advice for any of our younger patients who want to be involved in sports? Or maybe advice for nervous parents?

My first piece of advice is to not be afraid. The benefit of our disorder is the ability to take extra factor doses as needed, allowing us to participate in athletics almost fully protected. Personally, I’ve done soccer, tennis, dance, gymnastics, skiing, and currently I am a member of the UC Davis Swimming & Diving team. While it’s important to be cautious, it’s also crucial to let your child enjoy life without feeling boxed-in by their disorder. Our first hematologist’s advice was simple: no wrestling or tackle football, but everything else was fair game. I carry that mindset with me, prioritizing my happiness and interests while knowing I can take the necessary steps to stay safe.

Last month, you traveled to Florida to sit on the Patient Panel at the Foundation’s Provider Education Workshop. How was your experience attending that event?

I was honored to participate in the Provider Conference and learn directly from those who treat us, gaining a deeper understanding of their experience. It was encouraging to see how many providers are dedicated to our disorder. As someone planning to pursue a medical career with a focus on hematology, I was really interested in exploring the research and development opportunities in the field. There’s been a strong desire for better treatment, but it’s not always clear how to make that happen. The presentations at the conference helped answer those questions and gave me a sense of hope for what the future could hold.