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Rett Syndrome with Beth Johnsson

By Hidden Disabilities Sunflower The Sunflower Conversations Share
 
 
 

"She's got epilepsy, she has scoliosis, she has apnoea, she has respiratory problems, she has digestive problems. She’s waiting for a gastrostomy. She might need spinal surgery. There are over 50 symptoms of Rett Syndrome, all of them are awful, and some of them are life-threatening, and she has a lot of them."

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:

DOWNLOAD FULL TRANSCRIPT HERE

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
 
Want to share your story? email [email protected]

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

 

SUBSCRIBE, rate and share The Sunflower Conversations by clicking here.

The Sunflower Conversations is a podcast that delves into different non-visible health conditions to enable the listener to learn more about the causes and symptoms and the physical and social impacts that can occur. The conversations are with Sunflower wearers who share their lived experience of disability and who give a walkthrough of the ups and downs that are personal to them.

We also talk to healthcare professionals and charity experts who deliver an overview of specific disabilities and offer advice and signposting for support. If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Music by "The Emerald Ruby" Emerald Ruby Bandcamp & Emerald Ruby website

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