by ANNA GROOVER
Sneha Dave learned to cope with chronic illness when she was just a little girl. At age 6, she was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD) affecting the large intestine. At age 14, she had her large intestine removed, and weighed just 60 pounds when she started high school.
It was then that Dave realized how little community existed for young people like her. “Most,
if not all, young adults with chronic illnesses have some form of anxiety or depression just because of the isolation,” she says.
Along with her friend Cory Lane, who died in 2012, Dave started a newsletter for young adults with IBD. At its height, it had a readership of 10,000.
As an Indiana University freshman, the Greenwood, Indiana, native was struck by the lack of resources for young adults facing chronic illness. In 2017, she founded Health Advocacy Summit (HAS), a conference that brought together 14 young adults to discuss vocational rehabilitation, workplace disclosure, mental health, and policy.
HAS, a nonprofit funded by the Cystic Fibrosis Foundation and the Helmsley Charitable Trust, has now expanded into six states. And Dave, now 21, has revised her newsletter into the Crohn’s and Colitis Young Adults Network, an online platform that produces videos, articles, and stories by young adults with inflammatory bowel disease. The initiative is supported by HAS.
Dave is also involved in local politics. In 2018, she established the Ninth District Disability Caucus within the Monroe County Democratic Party and created a voting guide for Hoosiers with disabilities. “Disability has just historically been forgotten in talks about diversity and inclusion,” she says.
Despite all this, she manages to squeeze in other activities, like rock climbing at Hoosier Heights. “That helps me just have some time for myself,” she says.
Dave will graduate in May with degrees in journalism and chronic illness advocacy, a major she designed through IU’s Individualized Major Program. Then, she says, she’d like to take a gap year to be a park ranger in Montana before pursuing medicine or health economics, fields she’s been introduced to through internships at Harvard University and Pfizer.
Dave hopes to remain executive director of HAS for a few years before passing leadership to another young advocate.
For more information, visit ccyanetwork.org.