EB is a rare genetic skin fragility disorder, and children who have it are often referred to as ‘butterfly children’ because their skin is so fragile and easily damaged. Treating EB requires unique expertise which Birmingham Children's Hospital’s dermatology team is internationally renonwned for.
Delegates from as far afield as Japan, Russia and Bahrain praised the holistic approach of the skilled team - made up of many staff across the hospital including dieticians, physiotherapists, surgeons, dentists and ophthalmologists - to name just a few.
The course was organised by consultant dermatologists Professor Celia Moss and Dr Fiona Browne, and the EB nursing team.
Professor Moss commented: “It’s a lot of work organising the course, but we get fantastic feedback from the delegates and we know that it is really appreciated - especially by those who are trying to set up services in their own countries.”
One of the most popular parts of the conference was the 'patient panel', where a group of bright and articulate patients answer questions about day-to-day living with EB.
Ruth Ward, the lead nurse for the service said: “EB is a distressing condition and this service was set up in order to help families living with it to achieve the best quality of life they can. We have built a supportive team and we are all proud of our service here at Birmingham Children’s Hospital. We have grown with our children and learn from them every day. Families living with EB have huge challenges and we are often inspired by the way they cope with their difficulties.”