With a successful career in communications and advertising and a love of concerts, running, reading, and spending time with her loved ones, Rocio Castrillon never expected to be one of the 3 million adults in the United States living with inflammatory bowel disease (IBD).¹ IBD, which includes Crohn�s disease and ulcerative colitis, is not fully understood, but the immune system, environment, and genetics are all believed to play varying roles. In patients with IBD, the immune system responds inappropriately to an unknown environmental trigger causing inflammation of the gastrointestinal tract.^2,3 IBD patients may also have inherited genes that make them more susceptible to developing a chronic inflammatory response.³ However, there are currently no defined biomarkers suitable for genetic testing or as a diagnostic tool.³ Patients living with IBD frequently have a poor quality of life and experience a financial burden as a result of the disease.^2,3

Rocio was familiar with the decreased quality of life that many IBD patients experience, especially during the more than 5 years she struggled to find a diagnosis and care that relieved her symptoms. While pursuing a diagnosis, Rocio was subjected to two invasive and complex surgeries. She says, “Without a diagnosis, yet living with debilitating symptoms, I kept my health private. I lived in shame and fear because I didn�t know what I was living with. When I was finally diagnosed, it opened up a whole new world for me � a community of IBD patients who would soon become friends and many as close to me, if not closer, as my �IBD family�.” In 2008, Rocio was finally diagnosed with Crohn�s disease, a form of IBD that can affect any portion of the gastrointestinal tract, often starting in a portion of the small intestine directly before large intestine and causing symptoms such as diarrhea, abdominal pain, bloody stool, weight loss, and fatigue.²

Rocio, empowered by her sense of belonging to the IBD community, set out to improve the quality of life for other IBD patients. In 2009, she became a member of the Crohn�s and Colitis Foundation, where she first got involved in �Team Challenge,� an endurance training program that coaches individuals to participate in events such as 5K races, marathons, triathlons, cycling, and hiking. As part of Team Challenge, Rocio helped fundraise and completed her personal goal of running a half-marathon. She joined her local Crohn�s and Colitis Foundation chapter and volunteered with �Take Steps� and �spin4 crohn�s & colitis cures� events, which aim to increase IBD awareness and raise money for the foundation. On a national level, Rocio is part of the Crohn�s and Colitis Foundation�s grant committee, on which she serves as a Stakeholder Reviewer helping to review, discuss, and critique proposals for funding consideration. She is also involved in the Patient Advisory Task Force, working with other IBD patients and caregivers to make an impact on education programs and resources for the foundation.

Rocio�s personal history with IBD and her robust community engagement led to her nomination by the Crohn�s and Colitis Foundation to be a consumer peer reviewer for the Fiscal Year 2020 PRMRP. Consumer reviewers are critical to the review process, as they offer a unique perspective to funding recommendations. Rocio was eager to represent IBD patients and share her point of view, and she says, �I have been honored to be an active voice in the meetings and truly feel that I am valued. Not solely for my feedback and critique of the proposals, but truly my voice as an IBD patient.� As a member of the PRMRP peer review panel, she has learned about advancements in IBD research and has been excited to meet researchers who are genuinely driven to help IBD patients. She wants others in the consumer advocate community to know that �one voice can make a difference for change and so I [will] continue using my voice as a patient advocate and recommend that anyone who is passionate also pursue consumer advocacy work.�

References:

¹ https://www.cdc.gov/ibd/data-statistics.htm

² https://www.cdc.gov/ibd/what-is-IBD.htm

³ https://www.crohnscolitisfoundation.org/sites/default/files/2019-02/Updated%20IBD%20Factbook.pdf