Faces of EB

Click one of the pictures below to learn more about the realities of life with EB

Sohana

Sohana

Hi, I’m Sohana, and I have a horrible skin condition called Recessive Dystrophic Epidermolysis Bullosa. I try not to let ...
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Poppy

Poppy

Our morning routine with Poppy: Up at 5:45 and get myself ready. Wake Poppy at 6:15. Full dressings refresh and ...
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Phoebe

Phoebe

Researching a Cure into EB gives families like mine real hope that one day my daughter, who has RDEB, can ...
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Gabrielius

Gabrielius

Gabrielius’ morning begins before 7AM, while he is still asleep. We start by changing the dressings on his legs. When ...
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Mason

Mason

Mason gets up for school about 7am when his respite nurse leaves. We will do any dressings that need doing ...
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RAchel and Hon

Rachel & Hon

I met Hon back in 2009. He was busy working for Whizz-Kids, teaching children how to use their wheelchairs. We ...
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Dylan

Dylan

By Karen, Dylan's mum After a healthy and low risk pregnancy, our beautiful son Dylan was born in June 2017 ...
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Photo of Jenna & her family

Jenna

I grew up in a family where I was the first to be diagnosed with EB Simplex (EBS). I never ...
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Isla

Isla

Isla's Day We turn off Isla’s feeding pump and give her her morning meds at about 7:30am and then wake her as ...
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