Faces of EB

Home > What is EB > Faces of EB

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

Sohana

Sohana

My Day by Sohana At 8am I wake up to take five different medications and allow them to set in ...
Read More
Poppy

Poppy

Mornings are getting tougher the older she gets. Sleep is constantly broken throughout the night when she is in pain ...
Read More
Noah

Noah

Noah has EB Simplex Dowling Meara and was diagnosed at birth. We had never heard of EB at this time ...
Read More
Sofia

Sofia

Sofia was born in 2022 with RDEB. She was diagnosed at birth when she was born without the skin on ...
Read More
Albi

Albi

Our little boy Albi was born with severe Recessive Dystrophic Epidermolysis Bullosa ...
Read More
Gabrielius

Gabrielius

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

Mason

Mason gets up for school about 7am when his respite nurse leaves. We will do any dressings that need doing ...
Read More
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 ...
Read More
Dylan

Dylan

By Karen, Dylan's mum After a healthy and low risk pregnancy, our beautiful son Dylan was born in June 2017 ...
Read More
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 ...
Read More
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 ...
Read More
Jackson

Jackson

My son was not diagnosed with EB at birth. We noticed his first blisters at 4 months old. I had ...
Read More
Photo of Jennifer wearing a hat and sunglasses, with hills in the background

Jennifer

When I was born in 1972, not much about EB was known. No one else in my family had it ...
Read More
Ala'a

Ala’a

Living with EB has taught me how to be strong and tolerate severe pain. Therefore, it will not stop me ...
Read More
Vie

Vie

Finally, just before I turned 28, I was diagnosed with EB. And my world opened up! I was finally part ...
Read More
Allison

Allison

I gave the faulty gene to my lovely son. He is in constant pain but smiles through it - he ...
Read More
Cart
Checkout - £0.00
  • 0
  • 1