Navigating Life with Hypermobile Ehlers-Danlos Syndrome: Lauren Brown's Journey
Zebra Talks: Living Your Best Bendy LifeShow Notes
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
More from Zebra Talks: Living Your Best Bendy Life
Host Dr. Libby Hinsley welcomes Jennifer Parkinson, a certified functional nutrition practitioner and founder of EDS Nutritionist, who supports people with Ehlers-Danlos Syndrome, MCAS, and POTS.
Host Dr. Libby Hinsley welcomes physical therapist Dr. Laura Glazebrook to discuss scoliosis, especially its overlap with hypermobility. Laura shares her own history of rapidly progressing scoliosis, undergoing a spinal fusion at age 11, and later realizing she likely falls on the hypermobility spectrum.
Dr. Libby Hinsley welcomes menopause specialist and nurse practitioner Vanessa Weiland, founder of Phases Clinic and creator of Bendy Menopause, who also has hypermobile EDS and MCAS.
Host Dr. Libby Hinsley interviews Abbey Phillipson, a classical Ehlers-Danlos syndrome (EDS) advocate and Paralympic strength and conditioning coach at the University of Michigan. Abbey shares her experience with early signs, diagnosis via genetics (COL5A1), and serious complications of Classical EDS.
Host Dr. Libby Hinsley interviews pelvic floor physical therapist and author Dr. Amy Stein, founder of Beyond Basics Physical Therapy. Stein discusses the strong overlap she sees between hypermobility and pelvic floor dysfunction (estimating about 70% of her patients), including patterns of pelvic floor gripping used for stability, pelvic pain, prolapse, hernias, constipation/IBS symptoms, possible pelvic congestion, and bladder, bowel, and sexual dysfunction across all genders.