Jul 11, 2012 09:24 BST here are the epidermolysis bullosa team from Birmingham Children's Hospital
BCH celebrates 10th birthday of UK’s service that looks after ‘butterfly’ childrenJul 11, 2012 09:24 BST
Families of children with a very rare skin condition, epidermolysis bullosa (EB), celebrated 10 years of the dedicated specialist service at Birmingham Children's Hospital on Saturday 7 July with a party.
Professor Celia Moss established the EB service in 2002 – one of only two specialist paediatric services in the UK. EB is a rare genetic condition that causes the skin and internal body linings to blister when rubbed or knocked. It affects 1 in 17,000 people and there are thought to be 5,000 people in the UK with the condition.
Professor Moss secured funding from the government for all the different specialties involved in EB care, set up a multidisciplinary clinic and recruited specialist nurses to provide practical help and support with an outreach service to children with EB in the Midlands and North of the country. The service is now headed by dermatologist Dr Fiona Browne after Professor Moss’s retirement last year.
The children enjoyed craft activities, a clown performing magic tricks and a disco, paid for by Debra, the national EB charity. Patients, old and new, along with staff came to celebrate. Debra, the EB patient organisation, provided the funding for the entertainment and party food. There was also a surprise guest appearance from our Chief Executive, Sarah-Jane Marsh and Mr David Nicholson, Chief Executive of the NHS.
Ruth Ward, lead nurse for the service said:
“Families living with EB have huge challenges and our service helps families to achieve the best quality of life they can. People who work in the service tend to want to stay as it is very rewarding to be able to make a difference. We have built a great team that works very well together and we are all proud of our service here at BCH. We have grown with our children, learn from them every day and are often inspired by the way they cope with their difficulties.”