People diagnosed with the painful skin condition, epidermolysis bullosa (EB), are “crying out” for mental health support, the Debra Ireland charity has said.

Around 300 children and adults are currently living with this rare, genetic condition that causes the skin’s layers and internal body linings to separate. As a result, even the slightest touch can cause severe pain, blistering and sores.

These skin blisters have to be lanced and dressed every day and this can take up to three hours. There is currently no treatment or cure for EB.

According to Debra Ireland, many of those affected are overwhelmed by the condition and an increasing number are presenting with mental health problems. These problems are fuelled by issues such as a lack of nursing resources.

“EB is a hugely distressing condition and in the most extreme cases, the treatment involves extremely painful bandage changes. These and other patients face additional stressors, such as feeling they may be a burden on their families and a lack of nursing resources. This ramps up the pressure,” explained the charity’s CEO, Jimmy Fearon.

He noted that many healthcare workers are unfamiliar with the condition and this results in people with EB having to regularly explain their symptoms, which adds to the stress of living with the condition.

The charity is calling on the government to ringfence €160,000 a year to pay for a full-time adult psychologist to help EB patients and their carers. It asked for this in its pre-Budget submission last October, “but the call went unanswered”.

“People with EB are literally crying out for help with their mental health as they struggle to cope with stress, feelings of loneliness and isolation. Carers and families also need support.

“It is hard to imagine anything more upsetting than listening to your child scream in agony for hours when their wounds are being dressed, but this is the reality for parents of children or adults with the most severe form of EB,” Mr Fearon pointed out.

For more information on EB and Debra Ireland, click here.