From Researcher to Lymphocytic Colitis Patient Ben From South Dakota

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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 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.

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Chapter Markers

0:00:00 Intro
0:02:17 Diagnosis story Lymphocytic Colitis
0:04:59 Steroid Treatment
0:07:52 Oral Lichen Planus Diagnosis
0:10:30 Researcher self employed
0:13:10 Medical experience
0:15:42 Physician Compassion
0:18:17 Clinical Research and Healthcare Delivery
0:23:21 CORDS Rare Disease Registry
0:27:23 Rare-X
0:32:40 Rare Disease Naming
0:36:27 Disease Patterns
0:40:14 what researchers should know
0:45:55 Why doctors are discouraged from going outside their specialty
0:48:57 Family support
0:51:13 Advocacy
0:52:33 community
0:55:33 Statistical information varies by location
1:00:00 Leaky gut syndrome
1:04:24 diet, disease, location, & cost
1:06:00 Medical Nutrition Equity Act
1:10:28 Myths & Misconceptions
1:13:42 What gives ben hope
1:16:39 Changes Ben would like to see in the next 5 years
1:21:25 Our Oddessy
1:22:16 Remember The Girls
1:23:41 age &rare disease
1:25:49 conclusion

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