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Rett Syndrome with Beth Johnsson
Manage episode 379143849 series 3465393
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Beth Johnsson joins us to talk about Rett Syndrome. This rare genetic disorder affects brain development, resulting in severe mental and physical disability.
It's estimated to affect around 1 in 10,000 girls born yearly and is rarely seen in boys.
Beth talks about her personal experience with her daughter, Hannah, who was diagnosed with the condition when she was very young. Hannah now has a complex list of disabilities, including epilepsy, scoliosis, apnoea, respiratory problems, and digestive problems. She's waiting for a gastrostomy. She might need spinal surgery. There are over 50 symptoms of Rett Syndrome, some of which are life-threatening.
Despite Hannah's developmental regression, she brings joy to their busy household with her side-eye glances at her parents and giggling at her younger brothers' antics.
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Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
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