A dedicated service which treats people with a rare skin condition is helping patients across Scotland cope with their illness
Epidermolysis Bullosa (EB) is a rare condition which can be extremely debilitating for patients suffering from it and until recently there has been no dedicated service.
Now patients across Scotland are being offered support with their condition by two specialist nurses based in Glasgow.
EB is a condition in which the skin blisters extremely easily. Whilst the majority of patients suffer from the less extreme form of the condition for some patients it is extremely life limiting.
The dedicated EB service is supporting patients across the length and breadth of Scotland and is made up of adult EB nurse specialist Deborah Johnston and paediatric EB nurse specialist Sharon Fisher. Deborah is based at Glasgow Royal Infirmary and Sharon at the Royal Hospital for Sick Children, Yorkhill.
Speaking about their work, Sharon said: “Being a relatively new service we are working to see what works best to ensure all our patients across Scotland receive the care they need.
“Our patients still have lives to live and we want to make that as pain free as possible for them. This can mean working around their day starting early in the morning or visiting in the evening.
“Our job can be very varied from helping patients and carers choose and administer the appropriate dressings to going to theatre to give specialist advice and support.”
There are currently approximately 60 children and 212 adults with EB in Scotland and as yet there is no cure.
Deborah and Sharon not only help patients manage the condition but also liaise with other health professionals involved with the patients offering specialist advice and support.
Sharon added: “In addition to clinics in Greater Glasgow and Clyde we have set up clinics in Dundee and Edinburgh. These clinics offer access for children and parents in the east and north east making it easier for them to access support.
“We are also working to develop a care pathway for mums-to-be during pregnancy, birth and the care of newborns alongside piloting the most effective ways to improve knowledge and understanding of the condition in areas such as labour suites and neonatal units.”
Six year old Charlie was diagnosed with EB when she was only a few months old. Charlie’s dad had grown up with the condition which Charlie has inherited, although the condition has by passed her 18 year old brother.
Charlie has good days and bad days with her hands and feet in particular suffering the disease.
Charlie’s mum, Anne Marie, says her daughter copes remarkably well with the condition and generally doesn’t miss a lot of schooling.
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Notes to Editors
Epidermolysis Bullosa (EB) is a group of inherited disorders in which the skin blisters extremely easily. There are three main types ranging from a less extreme form to a life limiting form and until recently there has been no dedicated service.
Pic: Six year old Charlie's foot.