2020: The #RAREis Year of the Rare Young Adult

As someone living with a rare disease, New Year’s is my least favorite day. Amidst my twenty-something friends celebrating and exuberantly tracking time until the ball drops, I nervously count down until my annual medical screening routine starts anew, complete with countless doctors’ visits and procedures. You may call me the Scrooge of New Year’s but, don’t call me alone in my trepidations. This is far from out of the ordinary thinking for the herd of young adults dealing with rare disease that ring in the new year with me.

As we change the calendars, there are countless young adults wondering how their body will change in response to their disease and if the new year will bring new diagnoses. They grapple with the deluge of social media posts highlighting their successes and comparing life a decade ago to now which for some, demarcates a pre- and post-diagnosis life. Their previous year’s accomplishments may be measured in miles traveled for second opinions or simply managing to stay alive (which, by the way, is a huge success that should be celebrated!) instead of degrees acquired or exotic vacations taken. The optimism about the possibilities for the year ahead encompasses hope for better treatments and finally assembling the dream healthcare team that has experience with their disease.

Of course, goals for the new year can also include landing a stellar job and capturing that perfect selfie. Young adults with rare diseases are still contending with the usual challenges of young adulthood and transitions, they’re just compounded by more health-related concerns such as new co-workers understanding their complex medical needs and whether or not to show their ostomy in a beach selfie.

New Year’s is typically a time for contemplation about the previous year. In reflecting on the past year of hearing from the rare disease community, the overlooked, unique position that young adults contending with rare disease find themselves in stands out. Thanks to medical innovations and a renewed focus on rare, more of the over 50% of rare disease patients that are children are living longer and reaching those pivotal (and often awkward) young adulthood years and need resources specific to their path (Levine 2019).

Fortunately, New Year’s is also a time for change. #RAREis is aiming to change the limited dialogue around young adults and rare disease with its 2020 resolution: making 2020 the year of the rare young adult. Every month in 2020, the #RAREis blog will feature a post by a member of the young adult rare disease community highlighting a pressing issue or topic on life as a young adult zebra, including dating and relationships, family planning, body image, traveling with a rare disease and much more.  Through this initiative, we hope to help empower the young adults living with rare disease out there to view every year as their year. So, here’s to a 2020 filled with growth, adventure, and a spotlight on rare young adults!

Dakota Fisher-Vance is on the Patient Advocacy Team at Horizon Therapeutics and statistically speaking, 4 in a million, thanks to her two rare disease diagnoses of Familial Adenomatous Polyposis and a Desmoid Tumor. She co-founded the Young Adult Cancer Connection, a group for young adults with cancer experience in Philadelphia, and is dedicated to elevating the voices of those who have been the youngest in the waiting room.

Levine, D. S. (2019). Next: Imagining the Future of Rare Disease, 7. Retrieved from https://globalgenes.org/wp-content/uploads/2019/09/Global_Genes_NEXT_Report_2019.pdf