Episode 11: Lynsey Chediak on Rare Disease Awareness and the Dangers of Health Misinformation

This week on The EmpowHERment Show, Adama, Maddie, and Sam are joined by Lynsey Chediak, a friend of Maddie who has spent over a decade at the forefront of health policy and patient advocacy driven by a singular mission: addressing the unmet medical need of children affected by rare diseases like hers.

In this enlightening conversation, Lynsey shares her personal journey with arthrogryposis, a rare bone disease, and discusses the broader implications of rare diseases affecting millions of Americans. The discussion highlights the importance of advocacy, the role of caregivers, and the challenges posed by the current political climate in healthcare. 

Lynsey emphasizes the need for early diagnosis through newborn screening and the significance of language in describing health conditions. The conversation concludes with valuable resources for families navigating the complexities of rare diseases.

Here are some of the key takeaways from this episode:

 

• Rare diseases affect about 30 million Americans.
• Over 80% of caregivers for rare diseases are women.
• 95% of rare diseases lack FDA-approved treatments.
• Access to medical innovation can significantly improve quality of life.
• Newborn screening can save lives by identifying rare diseases early.

And if you want to tune in for specific portions, here’s the episode breakdown:

• 00:00 Introduction to Rare Diseases
• 06:08 Lynsey’s Diagnosis Journey
• 11:59 The Role of Advocacy and Community Support
• 17:59 Navigating Healthcare Systems: US vs. UK
• 29:07 Navigating Healthcare Costs and Insurance Plans
• 30:04 Researching Medical Specialists and Community Support
• 32:12 The Role of Digital Connectivity in Rare Disease Communities
• 34:08 Parental Choices and Quality of Life in Rare Diseases
• 36:34 Addressing Skepticism Towards Traditional Medicine
• 39:15 The Importance of Early Intervention in Childhood
• 41:16 The Language of Illness: Disease vs. Condition
• 45:29 Policy Changes and Healthcare Access for Rare Diseases
• 53:50 Advocacy for Newborn Screening
• 56:59 The Importance of Early Detection
• 01:01:07 Privacy Concerns in Healthcare
• 01:04:04 Resources for Rare Diseases

Check out the National Organization for Rare Disorders if you want to find more information and resources! And follow the EmpowHERment ladies on socials as well as subscribing on YouTube and wherever you listen to Podcasts:

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Mixed & Edited by Next Day Podcast

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