Irish people suffering with painful rare condition need mental health aid, charity says

A charity supporting Irish people with a rare incurable condition says sufferers are "literally crying out" for mental health support. 

That's according to the CEO of Debra Ireland, Jimmy Fearon, who made the call on behalf of people struggling to manage epidermolysis bullosa (EB), otherwise known as Butterfly Skin. 

Around 300 adults and children in Ireland live with the distressing condition, which causes skin and even the internal lining of the body to blister at the slightest touch. 

Fearon said, "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 the lack of nursing resources, ramps up the pressure." 

The charity, which supports patients and their families, says an increasing number of sufferers are presenting with mental health problems fueled by issues including stress, self-image and lack of nursing resources. 

Not everyone with EB bears the visible signs of the disease and many sufferers have faced the indignity of being judged for parking in disability bays. 

Debra Ireland is insisting the Government ringfences €160,000 a year to pay for one full-time adult psychologist to help EB patients and their carers deal with the reality of the condition. 

Fearon said, "Debra Ireland asked for a psychologist for EB sufferers in our pre-Budget submission last October, but the call went unanswered. 

"But just because the Government ignored our plea, doesn’t mean the need is no longer there. Far from it. 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.   

He continued: "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."