Epidermolysis Bullosa (EB) is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns. It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.
EB is characterised by skin fragility with blister formation occurring spontaneously or following minor trauma. EB can be broadly divided into four major categories: Simplex, Junctional, Dystrophic and Kindler Syndrome. These categories can be further subtyped based on inheritance and clinical features.
It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide. It occurs in all racial and ethnic groups and affects males and females equally. EB may not always be evident at birth. Milder cases of EB may become apparent when a child crawls, walks, runs or when young adults become more physically active. Patients living with EB are faced with daily challenge, as no cure exists and current therapies under development have faced both safety and technical challenges. EB is an area of unmet medical needs with current management focusing on relieving patient pain, stopping infections and providing dressings which are passive and do not address the symptoms associated with EB including severe scarring, infections and development of squamous cell carcinoma. Urgent research is needed to develop therapies that address these symptoms and for that we need your funding support.
The A – Z of Skin
An amazing accomplishment has recently been created by The Australasian College of Dermatologists – the country’s first online, comprehensive directory of skin conditions, created and peer-reviewed by more than 100 Australian dermatologists.
The free online resource, which can be viewed on mobile devices, aims to assist anyone who is searching for reliable information regarding skin conditions and their symptoms. It provides a trusted source of accurate information and images regarding more than 200 conditions, from common skin complaints, such as acne, psoriasis and skin cancer, to less frequent conditions, including vitiligo and lichen planus.
EB is one of the listed conditions in the directory, be sure to check it out: https://www.dermcoll.edu.au/atoz/epidermolysis-bullosa/
Joshua from NSW – 4 days old (Recessive Dystrophic EB)
Attendees of the DEBRA Australia National EB Camp, 2009
Rove McManus Presents: Living with EB :: Our brave butterfly children