Sneha Dave: A Nonprofit Founder Creating Support Networks for Young Adults With Chronic Illness
In her words, Sneha Dave is “an open book.” She loves to rock climb, even dreams about maybe one day being a park ranger, and she climbed Mount Kilimanjaro a couple of years ago. But beyond these bubbly charms lies a powerful young adult who has founded two nonprofits, Crohn’s and Colitis Young Adults Network and Health Advocacy Summit, organized Indiana’s first disability caucus, and has written for various media outlets, including US News. As a recent chronic illness advocacy and journalism graduate of Indiana University, Sneha hopes to further create support networks for young adults with chronic illness and increase cultural humility within healthcare.
Sneha’s journey with chronic illness advocacy started at the young age of six when she was first diagnosed with ulcerative colitis: a chronic inflammatory bowel disease very similar to Crohn’s disease. Throughout elementary and middle school, Sneha experienced a range of difficult symptoms due to her illness and “was just very sick all of the time.” Because of her symptoms, Sneha had to spend the majority of her elementary, middle, and high school years in isolation, receiving homeschooling instead of going to classes with her peers. Navigating this unique lifestyle, she noticed the lack of support within the medical system for young adults. While there were many resources for adults and children, the young adult demographic was often neglected.
Realizing that adolescence and young adulthood are arguably some of the most important times in our lives, Sneha wanted to help her peers in similar positions. She explains, “Our brain plasticity is changing so much, particularly during adolescence and young adulthood. So the choices that we make, the experiences that we undergo during this time period really do shape our adulthood. There's so much transition and independence happening during this time in general, but to add a chronic condition, you're having to deal with insurance for the first time on your own. Even filling your prescriptions and so many other things that are just hard.”
She decided to start a newsletter, Crohn’s and Colitis Teen Times, with her best friend. The newsletter’s main goal was to find other young people with inflammatory bowel diseases in the state of Indiana, who could support each other and form a community. The newsletter turned out to be a huge success, and Sneha’s observation about the lack of support for young adults with chronic illness held true not just in Indiana, but across the world. As the newsletter grew, Teen Times expanded into a website and rebranded as a fellowship program for young adults, resulting in the Crohn's and Colitis Young Adults Network. To Sneha, this immediate positive response was no surprise. “Of course there was a huge need. People really wanted to be able to see themselves [in others] their own age going through these conditions,” Sneha reflects. Today, the CCYAN has reached its third year as a fellowship program and has nine fellows spanning India, Malaysia, Canada, the United States, and Greece. Each fellow creates monthly content for the website that highlights their individual experiences with chronic illness.
Through the Crohn's and Colitis Young Adults Network’s success, Sneha began to meet more and more young adults with a chronic illness other than inflammatory bowel disease, “There were people who were young adults who didn't have IBD, but had other conditions that were really interested in what we were saying and our perspective because it was so relatable for them. So then my freshman year of college, I created the Health Advocacy Summit.”
In October of 2017, Sneha brought together fourteen young adults in Indiana for the first-ever Health Advocacy Summit: “a first-of-its-kind no-cost advocacy event for high school and college-aged students with chronic illnesses.” Throughout the event, these young adults discussed topics like mental health, access to mental health services, and health policy issues. Beyond discussion, Sneha brought in a vocational rehabilitation counselor who discussed the transitions from high school to college to workplace and a testimonial speaker who detailed her journey with five different chronic illnesses. The summit proved to be a great success and platform for young adults to connect and support each other. Throughout 2018 and 2019, it expanded into North Carolina, the Rio Grande Valley in South Texas, and San Francisco. The Health Advocacy Summit hosts about six virtual meetings per month for young adults with chronic and rare conditions.
Sneha has found it very important to be transparent about where the money for the organization comes from, especially stating that they do not accept funding from the pharmaceutical industry. To Sneha, this is a top priority as the key demographics of her nonprofits are young people who are not financially independent. She says, “If you look at the major disease-specific nonprofits, they all are funded in part or mostly by the pharmaceutical industry, at a time when one of the number one concerns of Americans, in particular, is access to prescription medications. That's fundamentally a huge hypocrisy in my opinion.”
Sneha has found it incredibly important to stay true to herself and the values of her nonprofits. As a South Asian-American woman and chronic illness advocate, Sneha faces challenges in a space historically dominated by white male voices. Though she is appreciative of any and all support to young adults with chronic illness, she believes that “we're very much forgetting the different perspectives, any unique challenges, for example, of being South Asian-American with a chronic illness. Things like mental health, which is just super stigmatized [in South Asian culture].”
“I would hope that there are more conversations within the medical system about having more cultural humility to be able to deal with and to interact with families like mine and others as well.”
Sneha found this to be especially troubling through her experience with dietitians. Whenever she met with dietitians, all they talked about were Western diets, such as meals with breadsticks and pasta. “That's not stuff that my parents really grew up eating at all because they both immigrated from India. So it was really hard for them to have to cope with that as well as trying to find different things and trying to relearn a diet that was just not working for our family and for our demographic,” Sneha recalls. Beyond diets, Sneha also experienced the heavy stigma of conditions like hers within the South Asian-American community. “I feel like my relationship with my culture and my religion was really impacted by my chronic illness,” she reflects, “because it was always like, I would be the gossip of the town if we were to go to like conventions and stuff like that because obviously my body was changing so much and looked sick. I looked quite literally like a ghost at some points.”
Sneha channels these complex and intersectional experiences into her advocacy work by bringing diverse perspectives into the conversation at the Health Advocacy Summit. She has worked with Latinx communities in South Texas and has seen how chronic illnesses are perceived within other cultural communities outside of her own. She hopes to advocate for cultural awareness within American medical systems through using her platform and voice to incite change, “I would hope that there are more conversations within the medical system about having more cultural humility to be able to deal with and to interact with families like mine and others as well.”
Beyond the work of individuals who experience chronic illness, those who are outside of the community can also help out. In Sneha’s opinion, it is most important to be critical and mindful of the organizations you donate to and advocate for. But beyond that, she highlights the power of listening. She emphasizes the importance of “recogniz[ing] the unique day-to-day challenges that those with chronic illness face.” She continues, “[I]t's very isolating to go through systems like higher education, like the workplace without having a peer to be able to lean on to. And if [there is a] peer [who] doesn't have a chronic illness, but is willing to listen and to really understand, I think that that's a really, really big deal.”
From exploring her identity as a young adult with chronic illness to co-founding multiple nonprofits, Sneha Dave is dedicated to uplifting new and diverse perspectives within the space of chronic illness advocacy.
STORY MALLIKA CHENNUPATY
PHOTOS SNEHA DAVE