Press release – February 6th, 2023

People diagnosed with a painful skin condition are “literally crying out” for mental health support as they struggle to manage the incurable disease.   

Around 300 children and adults in Ireland live with distressing epidermolysis bullosa (EB), also known as Butterfly Skin, and, according to charity DEBRA Ireland, many are finding the symptoms overwhelming.  

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

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

Now DEBRA Ireland is insisting the Government ring-fences €160,000 a year to pay for one full-time adult psychologist to help EB patients and their carers deal with the stress, isolation and loneliness that living with a rare disease brings.   

“EB is a hugely distressing condition and in the most extreme cases, the treatment involves extremely painful bandage changes,” said Jimmy Fearon, CEO of DEBRA.  

“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.” 

Unfamiliarity with the disease amongst healthcare workers is another common problem faced by people with EB, and having to explain their symptoms on a regular basis adds to the stress of living with a genetic condition.   

The rare and progressive disorder can cause the skin and internal lining of the body to blister at the slightest touch.   

Mr Fearon said the State funding should provide dedicated mental health support people living with EB nationwide and their carers. 

“DEBRA Ireland asked for a psychologist for people with EB in our pre-Budget submission last October, but the call went unanswered,” he said.  

“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.  

“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.”