‘Butterfly skin’ disease under the spotlight

An international symposium on epidermolysis bullosa will be held in Brisbane next week.

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National and international epidermolysis bullosa experts will meet in Brisbane next week to share the latest research on the rare and debilitating condition also known as “butterfly skin” disease.

The EB Health Professionals Symposium will be held at the Rydges South Bank on 2 August. It has been organised by DEBRA Australia, a non-for-profit organisation that supports people living with the disease.

The program will feature clinical updates and presentations on therapies under development, clinical practice guidelines, genome editing, diagnostic services, podiatry and eye care in EB, supportive care needs of parents with EB, infection control and important research updates.

Stanford University Professor Peter Marinkovich, who has spent much of his career investigating the pathogenesis and treatment of EB, is one of the key guest speakers, and will discuss the impact of Vyjuvek gene therapy on US families with EB.

UNSW professor of dermatology Dedee Murrell will present her best tips on coping with fragile skin, and Associate Professor Ignacia Fuentes from Clinica Alemana-Universidad del Desarrollo, Chile, will provide an update on the latest therapies under development for EB.

Dr Zlatko Kopecki, DEBRA Australia vice chair and board member, said it was an important gathering.

“In our fight to improve how we manage EB we are thrilled to host a health professional symposium, with presentations from prominent experts in EB,” said Dr Kopecki, who is also chair of the DEBRA Australia research and education committee.

“DEBRA Australia is pleased to be in a position to advance the medical community and patients’ understanding of the nature of EB, and further provide support to those living with EB.”     

Other guest speakers include Dr Hillary Sheppard (University of Auckland), Dr Mark Popenhagen (University of Colorado), Dr Tariq Khan (St George Hospital, Sydney), Dr Hanif Haidari (University of South Australia), Dr Russell Gear (University of Melbourne), Dr Yiumo Michael Chan (TWi Biotechnology, Taiwan) and Dr Gink Yang (Centre for Eye Research Australia, Melbourne).

Presentations will also feature talks from early career researchers and nurses.

EB affects just one in 17,000 births globally, and an estimated 500,000 people worldwide. Its effects are crippling and, at times, life-threatening.

Individuals with EB are born without the gene needed to bind their skin together. The condition affects the skin and certain mucous membranes inside the body, which means any friction or rubbing of the skin can lead to large blisters and skin loss. 

Patients often have wounds over a large portion of their body which require three-hour bleach baths and dressing changes every second day.

Young children with EB are commonly dubbed ‘butterfly children’ because their skin is so delicate it can blister from heat, friction or even the slightest touch. Wounds heal slowly and can easily become infected which means they must spend much of their time in climate-controlled environments, spend their days bandaged up and unable to risk exposure to the hot sun. 

“The gathering of many national and international experts to share their knowledge is set to be another great success for DEBRA Australia as it continues to find ways to improve the quality of life for those living with EB,” said Dr Kopecki.

The symposium is also supported by Polymern, Sutherland Medical, Newman’s Own Foundation, TWi Biotechnology INC, Global Skin Org and the International Alliance of Dermatology Patient Organisations.