Assya Shabir, 34, from Birmingham
Growing up, I always knew I was different.
Born with a huge amount of missing skin and a large blister running across my stomach, it was hard not to notice.
Almost immediately after I was born, I was diagnosed with junctional epidermolysis bullosa (JEB), and I’ve had to live with it ever since.
Doctors first thought I wouldn’t live 24 hours.
It was a traumatic time for my mum, Nasim, now 54.
At the time, she didn’t speak much English, so she didn’t really understand what was happening to me.
However, she later learnt that the genetic condition, which affects one in every million people, causes external and internal blistering, and erosion on the skin in response to the slightest touch.
It meant that as a baby,
