S8, Ep 13- What Sjögren’s Really Looks Like: Cristina Montoya on Living, Advocating, and Educating

In this episode of The Health Advocates, we’re joined by Cristina Montoya, a registered dietitian, advocate, and patient living with both rheumatoid arthritis and Sjögren’s disease. Cristina shares her diagnosis journey, the challenges of managing symptoms from childhood to adulthood, and how she uses her lived experience to guide others through nutrition and advocacy. We also hear from Erik Stone, Director of Data, Learning, and Evaluation at GHLF, who breaks down insights from a recent GHLF survey of people living with Sjögren’s. Together, they highlight the need for better education, tailored treatments, and more support for the Sjögren’s community. Among the highlights in this episode: 00:54: Cristina Montoya introduces herself, her background as a dietitian, and her personal experience living with rheumatoid arthritis and Sjögren’s 01:39: Cristina explains how to pronounce “Sjögren’s” and offers a clear overview of what the disease is and how it progresses 04:04: Cristina shares her childhood experience with undiagnosed symptoms of Sjögren’s, including dry eyes, parotid swelling, fatigue, and difficulty swallowing 07:49: Steven asks about dietary considerations; Cristina explains how Sjögren’s affects the entire digestive tract and why food texture matters 10:25: Cristina offers ideas for eating leafy greens like kale and how smoothies can be adapted to reduce GI discomfort 13:23: Cristina shares what inspired her to become an advocate, describing herself as an “accidental advocate” who became active after attending her first patient conference in Canada 15:08: Cristina addresses common misconceptions, including that Sjögren’s is “just a dry mouth disease” and not disabling 17:38: Erik Stone joins the conversation to share GHLF’s survey findings: 84% of respondents want help managing symptoms and flares There’s still time to share your feedback — take our short survey here: https://us8.list-manage.com/survey?u=9d2bc7b86ce2e776e067d6fbc&id=92f785a222&attribution=false 20:24: Cristina reacts to the data and underscores the variability and impact of flares, especially for those without a co-occurring autoimmune condition 22:27: Cristina outlines the biggest needs in the Sjögren’s community: targeted treatments and improved management of fatigue, pain, dryness, and neuropathy 23:31: Cristina and Erik discuss who bears responsibility for education and call for better understanding at the medical school level Below are additional resources mentioned by Cristina during the episode: Sjogren's Advocate by Dr. Schafer: https://www.sjogrensadvocate.com/ The American College of Rheumatology, Sjogren’s Disease Experts, and Medical Educators Need to Step Up: https://bexiphd.com/blogs/news/the-american-college-of-rheumatology-sjogren-s-disease-experts-and-medical-educators-need-to-step-up   Sjögren's Recognized as a Disease, What's Next for Patients and Research?: https://www.arthritisdietitian.com/post/sjogren-s-disease-what-s-next-for-patients-and-research Contact Our Host Steven Newmark, Chief of Policy at GHLF: [email protected] A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF. We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Catch up on all our episodes on our website or on your favorite podcast channel.See omnystudio.com/listener for privacy information.