How an IU senior turned her struggle with chronic illness into an effort to help others – IndyStar

Health Advocacy Summit helps young people with chronic and rare diseases -- and was started by a young woman living with ulcerative colitis. Kelly Wilkinson, kelly.wilkinson@indystar.com

Sneha Dave spent far more time in the hospital than she did in the classroom during her first two years of high school.

Diagnosed with a severe form of ulcerative colitis years earlier, she had her entire large intestine removed when she was a freshman.Instead of math and history tests and extracurricular activities, her days were filled with infusions, follow-up surgeries and other medical procedures. It was not until her junior year at Center Grove High School that Dave had something resembling a typical high school experience.

Dave knew it would be difficult to adjust physically. She was surprised, however, by how hard it was to handle the social adjustment.

I was kind of stunted even emotionally, said the 2016 Center Grove High School graduate. I had always dreamed of having that normal high school experience, but I didnt know how stressful it would be.

Buoyed a few years later by a stint as a 2014 Riley Champion, an advocate for the children's hospital who shares her story publicly, Dave decided to do something to help others in her situation.Now a senior at Indiana University, she started the Health Advocacy Summit, an event that helps people ages 13 to 30 dealwith chronic illness.

Sneha Dave, an Indiana University student who has a chronic illness, started a national organization to help other youths in a similar situation.(Photo: Kelly Wilkinson/IndyStar)

Two years agoabout 15 chronically ill youth gathered for a daylong series of presentations in Indianapolis at the first summit. Topics ranged from policy issues such as the high costs of health care to the emotional challenges that having a chronic disease can raise.

Since that first meeting one summit grew to four, with two gatherings in California and one in Texas. Each free conference typically attracts 15 to 25 attendees, who hear about it through word of mouth or social media.

Dave would like to see the summits expand to other locations and reach more people.

While many organizations exist to promote awareness and support for those who suffer from specific diseases, Daves vision of an overarching organization focused on youth with chronic illnesses may be the only one of its kind, said Scott Bruun, executive director of the Chronic Disease Coalition, based in Portland, Oregon.

Why these groups are so important is that you can sympathize with somebody who has a chronic disease, but unless you have that disease and really understand its 24/7 its really hard to empathize, he said.

The Cystic Fibrosis Foundation this year named the Health Advocacy Summit a recipient of one of its Impact grants. The grants for up to $10,000 are given each year to projects designed to improve the lives of those who suffer from the genetic disorder.

With the grant, Dave and her organization will explore ways that people can attend conferences virtually. Videoconferencing and the like can be critical for people with cystic fibrosis who want to avoid crowds and the risk of contracting a germ that could make them ill. Many people with chronic illness may share the concern, so creating a virtual platform could benefit people with other diseases as well, said Piper Beatty, the foundations senior manager of strategic collaboration.

Once foundation leaders heard Daves vision, they saw its potential benefit for patients with cystic fibrosis and embraced it.

We really loved the focus that Sneha had and her group had on empowering people to take control of their own disease, Beatty said. We just think Sneha has a beautiful vision for growing her influence. We would love to see her really standing out as a role model for others.

Bruuns organization, which started four years ago to battle discrimination against people with chronic disease, has helped the Health Advocacy Summit organize its events. Samantha Siegner, the Chronic Disease Coalitions partnerships director, said she has been impressed with what she has seen.

Many college students who find themselves diagnosed with a chronic disease dont know where to turn, Siegner said. They may feel isolated from their peers and not want to share their condition with them. The Health Advocacy Summit provides an opportunity to meet others in the same situation.

One of the unique things that theyre doing is creating a safe space for college age people to come together and network and begin to understand the shared experiences that theyre all going through, Siegner said.

Daves own experience helped inform that. After finally fighting back to health halfway through high school, Dave threw herself back into extracurricular activities, returning to the tennis court and the hiking trail.Although she often felt fatigued, she was healthier than two years earlier when she had weighed just 60 pounds.

By her senior yearshe felt like she was finally starting to get the hang of balancing her classwork and extracurricular activitieswith her physical condition.

Then it was off to college.

Her first choice was UNC Chapel Hill, but she wound up at IU, a decision she does not regret because she remained close to her parents and doctors when health challenges arose.

Her college experience revealed to her an additional set of problems young adults with chronic illness face. These can range from dealing with professors who do not understand chronic illness flare-ups to talking to dining hall personnel about specific dietary needs. Finding health care away from home and navigating insurance also can pose a challenge.

Katelynn Moore, 21, an IU senior, attended the original summit and was hooked.Plagued with chronic conditions throughout her youth, Moore was finally diagnosed a few years ago with irritable bowl syndrome, interstitial cystitis, and GERD.

Moore returned more recently as a speaker. Inspired by her summit experiences,she now sees herself as an advocate for the needs of the chronically ill. She plans to attend medical school.

If I would have known back then what I do now, I would have fought and not gone through everything that I have, said Moore, who lives in Columbus, Ind. Its a really good place to find people you can connect with and have a community of people who can understand you.

Contact IndyStar reporter Shari Rudavsky at 317-444-6354 or shari.rudavsky@indystar.com.Follow her on Facebook and on Twitter: @srudavsky.

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How an IU senior turned her struggle with chronic illness into an effort to help others - IndyStar