For people living with EB, every touch matters. Everyday activities that cause friction on the skin can be extremely painful. While it is important to protect damaged skin, dressings – and particularly daily dressing changes – can become a source of further trauma.
With understanding and the right care, things can be improved for people with EB and their families and carers.
Understanding EB
DEBRA International, the EB patient advocacy organisation defines EB as ‘a group of rare disorders with many genetic and symptomatic variations.’ All types of EB are characterised by fragility of the skin and mucous membranes that blister and tear from mechanical friction or trauma.2’
EB affects males and females equally and can occur across all races and ethnicities. People with EB are often called ‘butterflies’ because their delicate skin resembles the fragility of butterfly wings3.
There is currently no cure for the overall condition and treatment is focused on symptom relief, such as pain management, wound care and preventative bandaging.
How EB affects daily life
Not only is the condition itself painful, but dressings on blistered skin need to be changed daily. This is time-consuming and can cause further pain and damage to already fragile skin.
Improving daily life for people living with EB means finding gentle dressing solutions that are easy to use and cause minimal pain.
