The Zebra in the Room: What Rare Disease Patients Want the World to Know

Pushing Forward with Alycia introduces Lynsey Chediak, a disabled woman and rare disease advocate whose lived experience has shaped work spanning government, global health policy, and biotech. Lynsey shares growing up with arthrogryposis alongside an unaffected twin sister, realizing her difference at school, while also navigating chronic pain, limited medical answers, and systems not built for patients. Additionally, she speaks about how insurance barriers before the Affordable Care Act impacted access. Lynsey discusses rare disease priorities, which includes faster diagnosis, better treatment access, and policy change. Her role at BioMarin involves work to remove prior authorization in California and urging listeners to meet their local representatives. She also recounts ignoring neck pain that resulted in surgery, underscoring self-advocacy, and closes with her mantra that people are stronger than what doctors and medical charts suggest. Mindset Shifts & A-ha’s ⚡ An Instant Connection 🩺 Doctors List the Problems, But Don’t Forget the Pros 🌱 Growing Up Differently 🧍 You Only Know the Body You’re Born In 🚧 Challenging Healthcare Norms 🎭 Now I Blend, and It’s Emotionally Complicated 🧬 Cancer vs. Rare Disease: The One-Gene Difference 📣 Raising Awareness and Advocacy ⏱️ Ending Prior Authorization Delays for Rare Disease Patients 💪 A Message of Strength and Hope 📊 Stronger Than the Medical Chart 🤝 Get Involved Quotes from Lynsey  ”If you see hoof prints in the ground  and you think it could be a horse or a zebra,  assume it's a horse." ~ Lynsey Chediak   “Everyone is so much stronger than their medical chart, than a flippant doctor's response about what they may think they see.” ~ Lynsey Chediak Skip-To Map 00:00 Podcast Welcome 00:25 Meet Lynsey Chediak 02:35 Growing Up a Patient 05:25 Twin Identity Moments 09:51 Femur Surgery Breakthrough 12:05 Insurance and Preexisting Care 16:10 Blending and Hidden Disability 18:42 Rare Disease Advocacy 101 21:30 Policy Work and Prior Auth 24:40 How to Support Locally 26:26 Broken Neck Wake Up Call 28:55 Doctors Listening Struggles 31:44 Pushing Forward Mantra 32:50 Final Thanks and Outro Connect with Lynsey ChediakLynsey’s Website | Lynsey’s LinkedIn Follow Up with Alycia ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Share Feedback with Alycia About the Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ |⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow Alycia on Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ |⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Connect with Alycia on LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ |⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Book Alycia for a Speaking Event⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ |⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Inquire on How Alycia Can Train Your Employees in Disabling Ableism⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ |⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Buy Alycia’s Disability Inclusion Micro Learning Video Series⁠⁠⁠⁠⁠ Learn more about your ad choices. Visit megaphone.fm/adchoices