Ciara Burnside: Navigating a Diagnosis of Epidermolysis Bullosa (Butterfly Skin)

Ciara Burnside joins me in this episode to talk about her 6 month old son Ralph who has Epidermolysis Bullosa, otherwise known as EB or Butterfly Skin. She explains what that is, what it means, and how her health anxiety added an extra layer of difficulty onto dealing with Ralph’s diagnosis. Ciara talks about the struggle to trust anyone enough to look after Ralph due to how fragile his skin is, and how the condition is so rare even medical professionals have struggled to handle in in the right way. 

 Ciara is on a mission to raise awareness of EB and is also campaigning for more research into the condition. You can sign the petitions she talks about in the episode here:

https://petition.parliament.uk/petitions/775393#main-content (UK only)

https://www.change.org/p/fund-a-future-for-people-living-with-epidermolysis-bullosa-eb (worldwide)

You can find Ciara on socials here:

Instagram - @ciaraburnsidex

TikTok - @ciaraburnside

 The charity Ciara mentions is here:

https://www.debra.org.uk/?gad_source=1&gad_campaignid=22557552939&gbraid=0AAAAADil0qsdhFLsFLoFVsqQFpd0rMi9h&gclid=CjwKCAjwifjVBhBKEiwAYx4K9BB3z8MnwM5nVtoPMNEEG9nw3Npj2622cAtkmXlDyucCqnfOeRGOFBoCMagQAvD_BwE