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Experiences

Following Your Dreams with IBD: Tips from the Experts

Rik standing next to his mom Anu at conference

No matter who you are, hurdles always exist on the path to achieving your goals. For the 6 in 10 Americans living with a chronic disease, these hurdles can be higher and more persistent, but not necessarily insurmountable. Need proof? Meet Rik and his mom and caregiver, Anu. About 4 years ago, as he was starting high school, Rik received a diagnosis of Crohn's Disease, one of two inflammatory bowel diseases (IBD). Today, Rik has graduated high school as a varsity athlete and at the top of his class, despite missing 40% of his first two years of school due to IBD-related reasons. But that's not the extent of his accomplishments thus far. He is also starting his freshman year at an Ivy League university, one of the first milestones on his way to achieving his goal of becoming a medical doctor.

There are no better experts on the daily impact a disease has than the patients and caregivers who live with it. We sat down with Rik and Anu recently to chat about their experience and, with their permission, we are happy to share their tips on how to make strides towards your own goals while managing a chronic disease.

Tip 1: Advocate for yourself
Anu took an advocacy approach from the start to support Rik in managing his disease—from being persistent in finding a physician who could diagnose Rik's initial symptoms to coming to doctors' appointments with pages of research findings. In the moments that Anu couldn't be nearby to support Rik, she appointed someone who could. For instance, Rik's high school guidance counselor helped find ways to reduce everyday burdens, such as not having to carry his books between classes after surgical procedures. With his mom as a role model, Rik feels prepared with the skills needed to advocate for himself during the transition to living on his own at college.

Tip 2. Share your experience
Rik and Anu have found that when you share your health care experience with others that everybody wins. While it sometimes takes some digging to find, many mediums exist for helping others through your personal learnings.

Consider these examples:

  • Anu and Rik participated in a Lilly CoDESIGN session, during which they gave feedback to a clinical trial protocol for IBD. In the process, they increased their knowledge about clinical trial participation (which leads us to tip 3 below) and gleaned insights from the other patient and caregiver participants.
  • Rik shares his IBD story broadly as an advocate for the Crohn's and Colitis Foundation. Through this work Rik joined a community of people affected by IBD and helps IBD patients, including students his age, realize that they are not alone in what they are going through.
  • Anu relied heavily on their hospital health portal app to help manage Rik's disease, and she provided feedback to help make it even better.

Tip 3: Define criteria for clinical trial participation
When it comes to clinical trial participation, timing and details matter. To help him prepare for future health care decisions, Rik defined the circumstances under which he'd consider clinical trial participation. For him, a good understanding of the benefit-risk considerations for the trial is key. While a clinical trial is not something he needs today, he understands his options and would consider one in the future.

Tip 4: Never give up
A silent disease like IBD brings with it a unique set of challenges. For a long time, Rik's peers had no idea why he frequently missed school or that, on top of it all, he was also suffering from migraines and asthma during class. Yet together, Anu and Rik take every challenge one day at a time and demonstrate that with a bit of resilience and perseverance, you don't need to give up on your dreams just because you have a chronic disease like IBD.

So with these tips in mind, we challenge you to set your own goals and make a plan to reach them. If you have advice to share based on your own health care experiences, let us know on Twitter.

Want to learn about IBD clinical research? Check out our resources here.

Tags: IBD, Patient Stories,

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