EPISODE · Apr 28, 2025 · 1H 29M
From Researcher to Lymphocytic Colitis Patient Ben From South Dakota
from Rare Connection · host Joanna
Send us Fan MailIn this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his professional insights from working on projects like the CoRDS Rare Disease Registry and the Experimental Therapeutics Screening Facility at Sanford Research.We talk about his path into research, how rare and overlooked diseases are studied, and the realities of living with chronic and invisible illnesses. We also touch on the importance of access to medical nutrition and support for rare disease patients.This conversation is for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider for personal medical care.✨ Rare Connection is available on YouTube and wherever you get your podcasts! Follow us on Facebook, X (formerly Twitter), LinkedIn, and join our private Facebook group for more rare disease community support.💬 Comment below or send me a text through the link in the show notes if you want to connect!🛒 Check out our new Invisible Disability Awareness t-shirt on Bonfire, combining the sunflower (for invisible disabilities) and the zebra (for rare diseases)! Link in the description. https://www.bonfire.com/invisible-disability-rare-disease-awareness/❤️ If you’d like to support the show financially, there’s also a 'Support the Show' link in the show notes.📞 If you or someone you know is struggling, help is available.Call or text the Suicide and Crisis Lifeline at 988Text HOME to 741741 to reach a trained crisis counselor.Thank you for being part of Rare Connection!#RareDisease #InvisibleDisability #PatientAdvocacy #LymphocyticColitis #OralLichenPlanus #RareConnection #RareChefChapter Markers0:00:00 Intro0:02:17 Diagnosis story Lymphocytic Colitis0:04:59 Steroid Treatment0:07:52 Oral Lichen Planus Diagnosis0:10:30 Researcher self employed0:13:10 Medical experience0:15:42 Physician Compassion0:18:17 Clinical Research and Healthcare Delivery0:23:21 CORDS Rare Disease Registry0:27:23 Rare-X0:32:40 Rare Disease Naming0:36:27 Disease Patterns0:40:14 what researchers should know0:45:55 Why doctors are discouraged from going outside their specialty0:48:57 Family support0:51:13 Advocacy0:52:33 community0:55:33 Statistical information varies by location1:00:00 Leaky gut syndrome1:04:24 diet, disease, location, & cost1:06:00 Medical Nutrition Equity Act1:10:28 Myths & Misconceptions1:13:42 What gives ben hope1:16:39 Changes Ben would like to see in the next 5 years1:21:25 Our Oddessy1:22:16 Remember The Girls1:23:41 age &rare disease1:25:49 conclusionSupport the show
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Send us Fan Mail In this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his professional insights from working on projects like the CoRDS Rare Disease Registry and the Experimental Therapeutics Screening Facility at Sanford Researc...
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From Researcher to Lymphocytic Colitis Patient Ben From South Dakota
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