Here at the Celiac Disease Foundation, we deeply value hearing stories from our patient community. Elevating the lived experience of people navigating celiac disease and recognizing the good work of our patient advocates are important ways to build community among our patients, caregivers, and supporters worldwide. Your stories are also a pivotal part of our collective, ongoing efforts to build awareness and fight for federal research funding.
Your story matters.
Stories open a window to our experiences, promoting understanding for people who don’t live with celiac disease. Stories cultivate empathy and encourage us to explore our feelings, values, and actions. And stories can inspire others to advocate for change and progress.
Sharing stories can also sometimes feel overwhelming, emotional, and intensely personal. Despite this, our community continues to engage, and we are so grateful for your courage, as together we have helped establish the clear need for research funding for diagnosis, treatments – and one day, a cure – for celiac disease.
Recently we’ve heard from three different patient advocates who allowed us to share their journeys with celiac disease in our news updates.
Nikki Spencer, an active Policy Advocate, participated in our Hill Days in Washington, DC this spring, and her partnership with the Foundation has helped our efforts to secure celiac disease research funding from the National Institutes of Health and the Department of Defense. After years of health struggles, Nikki was finally diagnosed with celiac disease in 2021 at age 44. “When I was first diagnosed, I did a lot of research, and the Celiac Disease Foundation kept popping up. That’s why I wanted to participate as a policy advocate. I think everything the Foundation is doing is absolutely amazing,” she said.
The Foundation recently launched a Patient Profile Series to share stories of patients living with celiac disease. Emma Kowzun, a dedicated patient advocate, also happens to be the Scientific Affairs Coordinator here at the Foundation. Emma’s story is like that of so many other patients who experienced a needlessly lengthy diagnosis. “I struggled with my symptoms for several years and had seen many different doctors before I received my diagnosis. I still remember being so relieved because I finally had an answer as to what was causing my symptoms all those years,” she said. “I want to help patients like me … so it doesn’t take years to receive a proper diagnosis.”
Foundation Development Manager Shalei L’Heureux, diagnosed at age 21, also shared her health struggles and experience navigating the disease. “I think no matter the age, being told that you have a chronic illness that is only treatable by going on a completely gluten-free diet has an incredible learning curve,” she said. Shalei used materials on the Foundation’s website to learn how to better advocate for herself in social situations. “Knowing firsthand how difficult the diagnosis is … I know that [the Foundation’s] work is incredibly important.”
Every story is unique – and we hope you will share yours.
Raising our collective voices will strengthen efforts to cultivate awareness, build community, and fight for resources that will advance diagnosis, treatments, and a cure for this life-changing disease. Please fill out our online form or email us at [email protected].
With your participation – and with your ongoing, generous support – we will continue making a difference for the millions of people living with celiac disease. As always, please reach out if you have any ideas, questions, or thoughts you would like to share with me or our team.
To Our Health,
Marilyn G. Geller
Chief Executive Officer