6. Here's a Warrior: Alice in Wonderland Syndrome ft Robin Powers
This week's episode is with Robin Powers, a warrior of Alice in Wonderland Syndrome. In her free time, she also loves to write and recently published a book about her other rare condition: Ehlers-Danlos Syndrome (EDS). After experiencing multiple hardships in her childhood, Robin became a young advocate, giving a voice to others with rare conditions who cannot advocate for themselves. She truly turned her pain into motivation and continues to make a significant impact in the rare disease community.
In this episode, we talk about the bizarre symptoms that accompany this incredibly rare neurological condition, the medical paper she co-authored and presented, how she remains positive despite societal judgement, and all the legislative advocacy she is doing on Capitol Hill. She even got to speak with the Senate majority leader!
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Follow me on Instagram- @neurologicaldisorderpodcast
Email me at- neurologicaldisorderpodcast@gmail.com
Follow Robin on Instagram- @robinalexixpowersamb
Links to help those with Alice in Wonderland Syndrome:
- https://my.clevelandclinic.org/health/diseases/24491-alice-in-wonderland-syndrome-aiws
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302569/#:~:text=Alice%20in%20wonderland%20syndrome%20(AIWS,common%20perceptions%20are%20at%20night.
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