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Epidermolysis Bullosa with Karen Thackray, DEBRA UK and Lisa Irvine

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Manage episode 467999903 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://staging.podcastplayer.com/legal.

Karen Thackray from DEBRA UK and Lisa Irvine joined us to discuss the rare skin condition epidermolysis bullosa (EB), sometimes known as butterfly skin.

Lisa and her daughter live with EB and offer first-hand insights into the genetic skin condition that causes painful blisters. Karen breaks down the four main types of EB and their varying impacts. Through our conversation, we aim to raise awareness and foster a deeper understanding of EB as a dynamic disability that causes severe pain, as well as the emotional toll of constant adaptation to manage and care for the skin and judgement of strangers.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.

Follow us on socials:

https://www.facebook.com/hiddendisabilitiessunflower/

https://www.instagram.com/sunflowerlanyardscheme/?hl=en

https://www.youtube.com/@hiddendisabilitiessunflower

https://www.linkedin.com/company/hidden-disabilities

Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

  continue reading

Chapters

1. Epidermolysis Bullosa with Karen Thackray, DEBRA UK and Lisa Irvine (00:00:00)

2. Understanding Epidermolysis Bullosa (EB) (00:00:30)

3. Living With Epidermolysis Bullosa Challenges (00:11:38)

4. Genetics and Care of Dominant EB (00:23:46)

5. Advocating for Individuals With EB (00:29:09)

6. Raising Awareness for Epidermolysis Bullosa (00:44:32)

128 episodes

Artwork
iconShare
 
Manage episode 467999903 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://staging.podcastplayer.com/legal.

Karen Thackray from DEBRA UK and Lisa Irvine joined us to discuss the rare skin condition epidermolysis bullosa (EB), sometimes known as butterfly skin.

Lisa and her daughter live with EB and offer first-hand insights into the genetic skin condition that causes painful blisters. Karen breaks down the four main types of EB and their varying impacts. Through our conversation, we aim to raise awareness and foster a deeper understanding of EB as a dynamic disability that causes severe pain, as well as the emotional toll of constant adaptation to manage and care for the skin and judgement of strangers.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.

Follow us on socials:

https://www.facebook.com/hiddendisabilitiessunflower/

https://www.instagram.com/sunflowerlanyardscheme/?hl=en

https://www.youtube.com/@hiddendisabilitiessunflower

https://www.linkedin.com/company/hidden-disabilities

Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

  continue reading

Chapters

1. Epidermolysis Bullosa with Karen Thackray, DEBRA UK and Lisa Irvine (00:00:00)

2. Understanding Epidermolysis Bullosa (EB) (00:00:30)

3. Living With Epidermolysis Bullosa Challenges (00:11:38)

4. Genetics and Care of Dominant EB (00:23:46)

5. Advocating for Individuals With EB (00:29:09)

6. Raising Awareness for Epidermolysis Bullosa (00:44:32)

128 episodes

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