#009. What is it like to live with the loss of skin every day? Skin that is so fragile the slightest bump will make it tear and blister.

This is The Silent Why, a podcast on a mission to open up conversations around loss and grief and to see if hope can be found in 101 different types of loss.

Loss #9 of 101: Loss of skin

Assya Shabir is in physical pain, day and night. She lives with a disorder called severe Junctional Epidermolysis Bullosa, also known as E.B., or Butterfly Skin. A couple of weeks ago, she popped up on our Instagram feed and we invited her share her journey with the loss of her skin on our podcast.

EB causes Assya's skin to tear or blister at the slightest touch, but she's also dealing with alopecia, pigmentation changes in her skin, osteoporosis and hand deformities. 

Yet there's something amazing about Assya, despite her heart-breaking losses, and that's why we got in touch with her. She is filled with an overriding message of hope, joy, and faith. Her strength and endurance was so inspiring we just had to share her story.

For more about Assya visit her Instagram: https://www.instagram.com/assyaebqueeen (content warnings are used on more graphic images of her condition).

Or visit these links to see her interviewed and skydiving:
https://www.bbc.co.uk/news/av/uk-england-39632829
https://www.bbc.co.uk/news/av/uk-england-39350922 

To learn more about EB visit: https://www.debra.org.uk 

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