The massive surgery to remove part of her large intestine was over, and the Center Grove are resident was ready to get back to school.
Sneha Dave felt alone and couldn’t find support for people in her situation — battling a chronic illness and trying to transition back into social situations, school work and typical life. She knew she needed to do something so that others wouldn’t suffer alone.
"There’s support within hospitals, but once you get better from a major illness there’s so many other challenges, whether it’s going back to school full-time, going out with friends; challenges you don’t face when you’re really sick," Dave said.
She has spent the vast majority of her life with ulcerative colitis, a chronic condition that affects about 900,000 Americans. About 700,000 more live with Chrohn’s Disease, also an inflammatory bowel disease.
Dave’s condition began when she was six years old but got progressively worse in middle school, causing her to miss large portions of the school year through sophomore year of high school. Throughout that time frame she underwent numerous medical procedures including colonoscopies and surgeries as doctors attempted to alleviate her illness. Her condition often left her in the restroom for extended periods of time and resulted in her spending much of the school day at home, which also caused her social life to suffer.
“One of my biggest challenges was living in a form of isolation due to my condition,” Dave said.
The Center Grove High School graduate and current junior at Indiana University decided that isolation was something she hoped other chronic disease sufferers would no longer have to experience, and last year she organized the first Health Advocacy Summit in Indianapolis.
“Most if not all (adults with chronic diseases) have some form of anxiety or depression,” Dave said. “It’s cool to have an open event, a conversation where people can talk with each other about the isolation they faced…it’s a person-to-person connection (that’s) often hard to create.”
Since that first year, the mission has grown to also include Texas, which will host a summit on Saturday, and North Carolina, which will host a summit on Nov. 11. Dave hopes to include California as 2019 summit locations among the current ones, with New York or Arizona also listed as possibilities. She said 15 people attended last year’s Indiana summit. She expects about 25 Hoosiers this year, with 20 people expected at both the North Carolina and Texas summits.
Dave said the goal for the summit is to connect high school and college-age adults with resources that can help them emotionally, educationally and professionally as they live with their chronic diseases.
One of the speakers, Dr. Steven Koch said the summits help young adults who are not only battling chronic conditions, but also the uncertainty of beginning adulthood.
"I think it’s more trying to have each of them identify for themselves what their goals are and then based on what they identify as those goals, what steps they will take to meet those goals," Koch said.
At the summits, attendees can talk with speakers about vocational rehabilitation, navigating the school system, workplace disclosure, getting involved with policy on chronic diseases and overcoming emotional barriers.
"(The ultimate goal) is to empower young adults to make them, if (they haven’t) already recognized, the potential to recognize they can be successful in their adult lives and careers," Dave said. "I also want them to feel connected with each other and their community — they’re not alone in their battles. I also want them to be future advocates in their workplace."
Dave said that setting goals has also helped her stay positive. Aside from founding and acting as the executive director of the Health Advocacy Summit, she also recently climbed to the summit of Mount Kilimanjaro, the tallest mountain in Africa.
“I like to set goals for myself,” Dave said. “Having something to work towards is very therapeutic for me. Last December I climbed Mount Kilimanjaro, which was a huge personal goal. A few years ago I couldn’t walk up the stairs by myself.”
As for her organization, she hopes to expand the program in the near future, but funding for the non-profit is the biggest obstacle. The organization has applied for grants, With additional funding, the organization can help connect more people who may feel they are alone in their struggle.
“Finding young adults with chronic conditions is difficult, getting them to want to come, but it was super meaningful for them,” Dave said.
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Health Advocacy Summit
Indiana event: Nov. 3 at the IUPUI campus center
Who will be there:
The summit will include three speakers. Aetna Student Health Chief Medical Officer Dr. Wendy Shanahan-Richards will speak on the topic of “transitioning to independence in managing insurance and bridging the patient and healthcare company discourse,” while Riley Hospital at Indiana University Staff Psychologist Steven Koch will join Riley Child Development Center Psychology Post-Doctoral Fellow Dr. Danielle Epler for a discussion about “overcoming emotional barriers and searching for meaning in your life.”
To donate or for more information:
Email [email protected] or visit healthadvocacysummit.org.
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