Blog: Intern Introspective #5

Last week, HFA held the Young Adult Advocacy Summit, or as we called it in-office, YAAS. Saturday’s evening began with a lovely introduction to all those who were flown in, and Noemy and I were quickly welcomed into the fold of young adults who were either bleeders or siblings of bleeders, just like myself.

Being in a room full of people who think similarly to you is incredibly inspirational. The room was full of people around my age who had vastly differing experiences, yet we were all united by our different experiences with our bleeding disorders. Whether it was the all-too-common female struggle to get diagnosed, or the stress of our families losing insurance, or simply the mental toll of dealing with a pre-existing condition from a young age, we have all experienced complications due to the nature of being a bleeder, or being related to one. But particularly at our age, when we are transitioning to adulthood yet still feel so young and new to the world in some aspects, yet feel so jaded in others, finding community can be the most empowering thing. The validation of others understanding the nuances of your personal experiences is incredibly valuable, and I know that many of the other young adults felt the same after the event.

Along with the opportunity to find community, us young adults were also presented with numerous programs and presentations to help us prepare for our own futures, as well as for the future of the bleeding disorders community. The complicated world of insurance is daunting for young adults as we approach independence, and we were lucky enough to learn tips and tricks about how to navigate the system and where to find support when we need it. We were also provided with programs that helped us better understand how to advocate- both for ourselves personally and for our niche community. Whether it be at the doctor’s office, at a local bleeding disorders organization chapter, or on a more state/federal level, there is so much to learn about how to tell your story, how to stand your ground, how to communicate your needs in a way that is beneficial to both parties. These skills we obtained over the weekend were invaluable, and I know that we all walked away from the event feeling much more knowledgeable and empowered within ourselves.

I hope that HFA and other bleeding disorder organizations continue to create programming that caters to different groups and categories of people, as I believe that finding community and engaging with them is incredibly important. The opportunity to learn information, especially that is presented in a way specifically to your demographic, is so fulfilling and is essential to the continued involvement of youth in advocacy efforts within our community.

— Karina Piu, 2023 Summer Intern