Inherited from parents who may not be aware they are carriers.1

It is estimated that 1 in 20,000 babies born will have some form of EB.4(2) Worldwide there are thought to be ~500,000 people living with EB.1,3 In the UK there are known to be 5,000 people who have the condition.1

Can be devastating

Intensely painful, recurrent blistering and chronic wounds of the skin can result in limited mobility. Not only does EB affect the external skin, but also the lining of the mouth and throat, the eyes and digestive system, leading to malnutrition, anaemia, intolerable itch and pain.4

No cure

Current treatment is focused on wound care which involves daily or regular dressing changes to protect the skin, encourage healing and prevent infection.4 Depending on disease severity, dressing changes can take several hours each day and can be extremely painful, often requiring the use of prescription pain medication.4

Life limiting

People with the most severe forms often don’t survive past childhood.1,3,4

Those with more severe EB have a higher chance of developing an aggressive form of squamous cell carcinoma (SCC), a type of skin cancer.1,4,5

More than skin deep: Epidermolysis bullosa

Maisy’s story

1. Debra UK (2018). What is EB?. https://www.debra.org.uk/faqs/faqs. Last Accessed February 2021.
2. Debra. EB in Depth. https://www.debra.irg/about-eb/eb-depth. Last Accessed February 2021.
3. EB Research Network (2021). https://www.eb-researchnetwork.org/research/what-is-eb/. Last Accessed February 2021.
4. Denyer J, Pillay E, Clapham J. Best practice guidelines for skin and wound care in epidermolysis bullosa. An International Consensus. Wounds International, 2017.
5. Hernández-Martín A, Torrelo A. Inherited Epidermolysis Bullosa: From Diagnosis to Reality Actas. Dermosiiliogr. 2010;101(6):495–505.