In this insightful episode, Dr. Jeremy Koenig sits down with Barby Ingle, founder of the International Pain Foundation and a trailblazer in the chronic pain and rare disease communities. Barby opens up about her journey through chronic pain and rare diseases, highlighting the challenges she faced, including her battle with reflex sympathetic dystrophy and breast cancer. She explains how genetic testing became a crucial part of her path to effective treatment, emphasizing the transformative power of genetic insights in patient care. Through her work with the International Pain Foundation, Barby advocates for greater access to genomic testing, with a mission to make individualized care accessible for all. From the origins of the "Nervember" campaign to Barby’s vision for a future where newborns have full genome sequencing, this episode sheds light on how genetic data can reshape healthcare. Tune in to discover how Barby’s experiences are creating a legacy of empowerment and hope for patients worldwide, and join us in exploring how DNA, environment, and behavior come together to shape our health potential.

Episode Highlights:

• Barby’s Journey with Rare Diseases: Barby shares her personal experience living with chronic pain and multiple rare diseases, including reflex sympathetic dystrophy and breast cancer.
• Importance of Genetic Testing: She discusses how genetic testing helped her understand her health better and contributed to more personalized treatment.
• The International Pain Foundation: Barby founded this organization to support people with chronic pain and rare diseases by promoting awareness, education, and access to care.
• Advocacy for Full Genome Sequencing: Barby emphasizes the need for accessible full genome sequencing, advocating that it should be available to everyone for better-informed health decisions.
• Nervember Campaign: Created by Barby, this awareness campaign held every November brings attention to nerve pain conditions and rare diseases.
• Collaboration with Sequencing.com: Barby discusses the benefits of partnering with Sequencing.com, which provides extensive DNA insights and secure storage for personalized treatment plans.
• Future Goals and Legislative Aspirations: Barby is actively pursuing legislation to ensure newborns have access to genetic testing, aiming to create long-term healthcare improvements.
• Empowerment through Community and Education: Barby’s mission includes spreading awareness and fostering a supportive community to empower patients with rare diseases and chronic pain to advocate for themselves and others.

Connect with Barby:

https://barbyingle.com/
https://www.instagram.com/barbyingleofficial/

LINKS:

https://www.drjeremykoenig.com/
https://www.instagram.com/drjeremykoenig/
https://www.youtube.com/@drjeremykoenig

Here's the link for this week's episode: https://drjeremykoenig.substack.com/p/the-polygenic-tapestry