))
Rett Syndrome with Beth Johnsson
Manage episode 379143849 series 3465393
Content provided by Hidden Disabilities Sunflower. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Hidden Disabilities Sunflower or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.
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.
For support:
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
Follow us on socials:
107 episoade
Distribuie
