What is EB?
BUTTERFLY SKIN (Epidermolysis bullosa - EB)
Butterfly skin or Epidermolysis bullosa (EB) is a rare, genetic and currently incurable condition that causes extreme fragility of the skin, leading to painful open wounds and blistering.
People with EB lack the essential protein
that binds the skin together which would usually make it resistant. They require extensive painful treatments and preventative bandaging every day to protect the skin from wounds and blisters caused by the lightest touch. Daily treatments for symptom relief can take up to 4 hours and are so painful that sometimes morphine is required.
According to the most recent figures from the worldwide DEBRA International network, the incident rate is one in every 50,000 people. There are currently more that 500 people with the condition in Spain.
Physical consequences
Butterfly Skin does not only affect the skin, it can also lead to widespread blistering on the internal linings and organs like the eyes, mouth and oesophagus and can make life extremely difficult. Other symptoms include, anaemia, syndactyly (fingers and toes fuse together) difficulty swallowing, digestive issues, malnutrition, sever pain, heart disease, disability and cancer.
Mental health consequences
The psychological repercussions of Butterfly Skin can also be devastating for both the person living with the condition and their family. Living with this condition can lead to profound desolation, anger and sadness as well as stress, anxiety, fear, depression and extremely low self-esteem.
