# A Rare Disease: No Symptoms Until It's Too Late with Elisabeth Carson & Lina El Zein

Page: https://stenobird.com/podcast/unlimited-with-elisabeth-carson-4126285/a-rare-disease-no-symptoms-until-it-s-too-late-with-elisabeth-carson-lina-el-zein
Text version: https://stenobird.com/podcast/unlimited-with-elisabeth-carson-4126285/a-rare-disease-no-symptoms-until-it-s-too-late-with-elisabeth-carson-lina-el-zein.md
Podcast: [Unlimited with Elisabeth Carson](https://stenobird.com/podcast/unlimited-with-elisabeth-carson-4126285)
Published: 2026-03-05T16:00:00+00:00
Episode link: https://www.buzzsprout.com/1819419/episodes/18796470-a-rare-disease-no-symptoms-until-it-s-too-late-with-elisabeth-carson-lina-el-zein.mp3
Audio file: https://www.buzzsprout.com/1819419/episodes/18796470-a-rare-disease-no-symptoms-until-it-s-too-late-with-elisabeth-carson-lina-el-zein.mp3
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Duration seconds: 4442

## Resource

Lina El Zein shares her harrowing journey of navigating a rare genetic condition, VHL, after years of her physical symptoms being dismissed as psychological. The conversation explores the intersection of medical gaslighting, maternal resilience, and finding purpose through advocacy.

## Highlights
- Main idea: The danger of medical gaslighting, where physical symptoms in women are often misdiagnosed as psychological distress
- Failure mode: The devastating impact of delayed diagnosis in rare genetic diseases like VHL
- Practical takeaway: Using knowledge and research as a tool for empowerment when navigating complex healthcare systems
- Main idea: The role of community and social media in amplifying voices for rare disease advocacy
- Practical takeaway: Finding ways to process profound grief and trauma while maintaining a commitment to family and future generations

## Topics

VHL, Rare Disease, Medical Gaslighting, Genetic Conditions, Resilience, Maternal Health, Patient Advocacy, Mental Health

## Chapters
- 1:00 — Introduction and Live Stream Opening: Elisabeth introduces the episode and shares her recent travels and upcoming live programming.
- 6:40 — Opening Meditation: A guided meditation focused on healing energy and compassion for Lina and her children.
- 18:20 — Intentions for Rare Disease Families: A moment of reflection and gratitude for families facing the challenges of rare diseases.
- 48:30 — The Reality of Medical Dismissal: Lina describes the physical symptoms she experienced and the frustration of being told her issues were purely psychological.
- 5:50 — Navigating Mental Health and Diagnosis: Lina discusses the heavy emotional toll of her diagnosis and her journey through therapy and medication.
- 7:40 — Turning Pain into Advocacy: Lina explains how her focus has shifted toward creating financial security and a voice for her children.
- 9:30 — The Power of Social Media and Presence: A discussion on using digital platforms for awareness and the importance of staying present in the moment.

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## Transcript

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