Paxton Mills is one of the newest members of NYLI, of the 2023 cohort. Paxton has been actively involved in the inheritable blood and bleeding disorders community since her diagnosis with having a rare platelet disorder. Watch the video or read the transcript below to learn more about Paxton's journey and diagnosis.
What is your name, role, and title with NYLI?
Hello, my name is Paxton Mills, and I am a member of the 2023 cohort with NYLI of the NBDF. I'm also a college student studying biochemistry and molecular biology. With NYLI and BDF, my role is to help the organization accomplish the goal of educating people about bleeding disorders and provide support for the community.
So, NYLI is really focusing on our professional development and leadership skills to hopefully have us become the next leaders of the bleeding disorders community nationally.
How long have you been a part of NYLI team?
Since I am in the 2023 cohort, I am relatively new to the NYLI, I started in May, and then we had BDC in August. Our onboarding took place for the NYLA cohort over the summer in July, so I am relatively new, but I will ultimately be a part of the older cohort, which is a two-year program.
So I am really looking forward to finishing up the first year and then going into the second year.
What drew you to this type of work?
I have tried to make it a habit to be involved with organizations and causes that have medical or scientific application or implications. When I was diagnosed I got involved with the Virginia Hemophilia Foundation, which iss my local chapter, and I absolutely fell in love with them.
I love their work, and volunteered with them at their annual Unite Walk, and really love the community that they have. Then once I became a senior in high school, at the Virginia annual meeting, the chapter executive director recommended that I apply for NYLI. She said, "this is a really cool program., and we've had other Virginia bleeders go through it, and I thought you'd be a good fit."
So I remember that evening going home and looking up NYLI and reading all about it. And I was immediately intrigued. I thought it sounded like an incredible program, and I'm pleased with my opportunity to join.
Do you mind sharing what bleeding disorder you have and experience with it?
I have a rare platelet disorder as well as some undiagnosed, unresolved hematological and bone marrow abnormalities as well. And I think a lot of people under the rare bleeding disorders umbrella, you know, group is that it takes a while to diagnose them. It was exhausting as a patient to have to go through that.
Uh, that process of finding that diagnosis, and I was lucky to ultimately find a hematologist who's an acclaimed diagnostician who didn't give up on me or finding that answer for me. I'm eternally grateful for her and the work that she does, because she was able to help me reach that diagnosis.
Rare, you know, bleeding disorders are now becoming something that we talk about more. So, you know, the experience previously had been maybe, you know, people hadn't heard of puberty disorder, that kind of thing, um, through no fault of their own. I mean, if it's not something that's as common, you might not have the exposure to it.
Now that we're actively making spaces to have those conversations. You can have those connections that happen between people.
What are your thoughts on the inclusivity of the NBDF rebrand?
I was so excited about the rebranding when announced at BDC. If you ask any NYL members who were spending time around me, I was so excited about it. It will be good for everybody in the community because we'll now have this explicitly designated forum for these conversations. You'll have obviously different experiences based on which bleeding disorder you have, but you'll also probably have a lot in common.
So if we're drawing into the conversation and pulling up more chairs to the table with a lot of different people with different bleeding disorders. I think it's going to be a lot of room for growth there for everybody involved to get to learn about. Not only someone else's experience, but maybe a different experience of somebody who has your bleeding disorder.
It's an exciting time for us!
What's your experience being a NYLI leader within the bleeding disorders community?
It surpassed my expectations, and it's a really great program. Our biggest thing so far was BDC for my cohort. At BDC, NYLI members helped ensure everything ran smoothly, so we filled in the gaps where needed. Uh, there's also really exciting to kind of, in a way, serve the role of like a staff member, you know, and BDF staff member, uh, helping to make sure this event was going to be successful, you know, when we needed to be pulled in one direction to fill in for someone who wasn't able to make it on time, that kind of thing.
So we helped to manage some of the sessions. Since then, I've been invited to speak on different panels, which has been great. I recently spoke on one of the Wednesday webinars, I'm fine panel, and likely to be on one coming up soon for rare bleeding disorders.
The opportunity to have an organization that wants to hear what I have to say gives me the opportunity to voice my experiences. It's just incredible.
Please share a hi-light of what you enjoy most about being a part of NYLI?
The fact that we have this space set aside to have conversations about our similarities or differences. I think that's really incredible. I think that's so valuable for those of us who plan to continue to be involved in this community, who see this as a lifelong commitment To give back to the community that helped all of us. Likewise, I think being in a place where we have that space is very important.
To learn more about NYLI visit https://www.hemophilia.org/who-we-are/our-team/meet-the-nyli.