Navigating Life with Hypermobile Ehlers-Danlos Syndrome: Lauren Brown’s Journey

In this episode of Zebra Talks, host Dr. Libby Hinsley discusses the challenges and experiences of living with hypermobility syndromes with guest Lauren Brown. Diagnosed with hypermobile Ehlers-Danlos Syndrome and POTS, Lauren shares her long and complicated journey through a diagnostic maze, frequent medical gaslighting, and the significant impact of finding knowledgeable and empathetic healthcare providers.

 

Despite her struggles, Lauren started a YouTube channel, POTS Zebra, to raise awareness and support others facing similar conditions. This episode highlights the importance of community, persistence, and self-advocacy in managing chronic illnesses.

 

Highlights of this episode include: 

 

00:00 Introduction to Zebra Talks

00:35 Meet Lauren Brown: A Journey with EDS and POTS

01:44 Early Signs and Misdiagnoses

04:13 High School Struggles and a Breakthrough

06:29 College and Beyond: Continued Challenges

12:45 A Lifesaving Diagnosis

13:46 Ongoing Health Battles and Advocacy

19:11 Finding the Right Doctor

19:45 Sharing the Journey

22:02 Medical Gaslighting and Bias

23:11 The Importance of Diagnosis

27:19 Building a Support Network

30:10 Starting a YouTube Channel

33:11 Resources and Support

36:02 Final Thoughts and Community