SKIN DEEP

Navigating Kimura's Disease – Jacob Edwards' Journey to Diagnosis and Treatment with Dupixent

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Could one injection treat your rare skin condition, severe asthma, AND eczema all at once? 

Dr. Anna Chacon, board-certified dermatologist and host of Skin Deep, welcomes Jacob Edwards, a 35-year-old patient from the West Coast who has been courageously battling Kimura's disease for over a decade. Jacob was among the first Caucasians diagnosed with this rare condition in the United States, making his journey particularly unique in the dermatological landscape. His experience with innovative off-label Dupixent treatment offers hope for others facing this challenging diagnosis. 

The discussion explores Jacob's decade-long journey from misdiagnosis to finding effective treatment through Dupixent. How did a patient-driven research approach lead to breakthrough results? The conversation covers the intense itching that accompanies Kimura's disease, the psychological impact of visible facial lesions, and the remarkable improvement achieved through biologic therapy. Jacob shares candid insights about living with a rare condition that affects quality of life, relationships, and self-esteem in ways most people never consider. 

In This Episode: 

  • (00:00) Patient reveals shocking misdiagnosis that changed everything 
    • (01:46) From baseball-sized lump to surgical surprise: Jacob's diagnostic journey 
      • (05:49) Mother's research leads to breakthrough Dupixent discovery 
        • (07:37) Dupixent success story: treating three conditions with one medication 
          • (14:01) Finding the right doctor and managing the psychological impact 
            • Share with a dermatology pro you know, like and subscribe to hear all of our future episodes! 

              • About the show: Welcome to Skin Deep, a podcast designed for dermatology professionals. Host Dr. Anna Chacon, a distinguished dermatologist and author, shares her unique experiences and offers valuable insights on the future of dermatology, including telemedicine and teledermatology in reaching underserved communities. Dr. Chacon provides actionable recommendations for dermatology practices, emphasizing compassion, patient education, and staying current with advancements in the field. 

              About the host: Dr. Anna Chacon, board-certified dermatologist and founder of Indigenous Dermatology, specializes in treating patients in remote and rural communities. As the first dermatologist serving Alaska's Bush region, she travels by bush plane to reach isolated communities. Dr. Chacon holds medical licenses in all 50 states, DC, Guam, and the U.S. Virgin Islands, providing both in-person and teledermatology services. 

              Resources:  
               
              Dupixent Information: 

              • Official prescribing information: https://www.dupixent.com/ 
                • Healthcare provider resources: https://www.dupixenthcp.com/ 
                  • FDA prescribing information: https://www.accessdata.fda.gov/drugsatfda_docs/label/2024/761055s064lbl.pdf 

                    • Kimura's Disease Research: 

                    • Frontiers in Immunology case study: https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2022.1084879/full 
                      • DermNet resource: https://dermnetnz.org/topics/kimura-disease 
                        • National Organization for Rare Disorders: https://rarediseases.org/mondo-disease/kimura-disease/ 
                          • NIH Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/6835/kimura-disease/ 

                            • Support Communities: 

                            • Reddit communities (search for rare disease support groups and dermatology communities) 
                              • National Organization for Rare Disorders support network 

                                • Website: www.drannachacon.com  
                                Facebook: https://www.facebook.com/miamiderm  
                                LinkedIn: https://www.linkedin.com/in/miamiderm/  
                                Instagram: https://www.instagram.com/miamiderm/ 

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