Young adult attendees at the 2017 International Vasculitis Symposium in Chicago.
By Ed Becker
One of the challenges for the Vasculitis Foundation (VF) is addressing the needs of a portion of the patient population labeled “young adults.” It’s an imperfect name for a demographic that spans a wide age range, from teenagers to patients in their early 30s.
Each subset faces different challenges, depending on whether they are in high school or college, are navigating a social life and relationships, or making career choices. Moreover, there’s a need to include parents and caregivers in educational efforts for patients who are still minors.
VF Board Member Allison Lint and other members of the Young Adult leadership have developed a more relevant and productive classification based on life stages, to better serve this wide-ranging demographic.
Lint explains that the upcoming 2019 International Vasculitis Symposium (July 19-21, Bloomington-Minneapolis, Minnesota) provided the perfect venue to incorporate the new classifications, which will apply going forward.
“When planning for the 2019 Symposium, we realized that the Young Adult categorization wasn’t a one-size-fits-all,” Lint says. “There are pediatric patients who are navigating school and family issues along with their illness, and for them, adult life still seems a long way in the future.”
Then there are those in their 20s and 30s who are dealing with an entirely different set of challenges. “We wanted to shift the demographic to be nuanced enough to serve the individual needs of different life stages,” she says.
Pediatric Patients (17 and under): The youngest patients are focused on home life and school. They want to return to “normal” life as quickly as possible after treatment. Being sick can affect relationships with siblings, parents and friends.
Teenagers with social pressures at school may feel they are facing their disease alone. “For this group, we are excited to introduce an art therapy session at the symposium,” Lint says.
College & Early Career (18-24): Young adults who go to college or enter the workforce might be dealing with their disease for the first time without the daily, hands-on support of their parents. A fast-paced college schedule or job may pose new stresses. This demographic may also begin serious relationships, or start a family, both of which can be affected by their illness.
Careers & Families (25-35): Patients in this category are usually fully independent adults. The issues of work, fitness, and child-rearing—and sometimes a sense of feeling “held back” by vasculitis—can become more significant at this age. “We’ll give these young adults a separate space at the symposium to freely voice their concerns,” says Lint.
Caregivers and Managing Families: The Young Adult leadership wants to acknowledge and provide support to the Parent Caregivers, especially those who still hold financial- and decision-making responsibilities. Many times they can benefit from sharing stories and information with other parents in the same situation.
“For each of these demographics, we’ll have a small panel of trusted physicians and support from the greater Young Adults group available,” she says. “There will be group dinners, a baseball game, outdoor activities, and more. We hope young adults and parents will join us for a fun-filled weekend of information, friendship, and support!”