Ehlers-Danlos Syndrome (EDS): The Fight for Diagnosis, Care & Advocacy

About this episode

This episode features a conversation with Lara Bloom about living with Ehlers-Danlos Syndrome and the importance of advocacy in healthcare.

Living with Ehlers-Danlos Syndrome (EDS) is more than just managing symptoms, it’s navigating a healthcare system that often doesn’t understand you. In this episode of Surviving Out of Spite, Sam sits down with Lara Bloom of the EDS Society to talk about what it really takes to live with and advocate for EDS. From the long road to diagnosis to the validation that comes with finally being heard, Lara shares her personal journey and the realities so many patients face. This conversation is honest, unfiltered, and a reminder that patient voices are not just important, they’re necessary. If you or someone you love is living with Ehlers-Danlos Syndrome, a rare disease, or navigating chronic illness, this episode will make you feel seen, and remind you that you’re not alone. https://www.ehlers-danlos.com

People in this episode

Host: Sam

Guest: Lara Bloom

Topics covered

• Ehlers-Danlos Syndrome
• healthcare advocacy
• chronic illness
• patient experience

Keywords

• diagnosis
• care
• patient voices
• rare disease

Mentioned in this episode

Products: Ehlers-Danlos Society

Books & works: Surviving Out of Spite

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