At DEBRA Ireland, we prioritise the voices of people living with EB to provide the best support and make the greatest impact. The EB Expert Panel are individuals with EB, family members of those with EB or family members who have lost a loved one to EB. The panel advises the DEBRA Ireland Research and Family Support teams.

The workshops occurred in person last November, with an online version taking place at a later date for those unable to attend. This workshop is envisioned to occur twice a year, allowing the panel to have their voice heard within various DEBRA projects. This is known as Patient and Public Involvement (PPI) and improves the quality of work DEBRA Ireland do for the EB community in Ireland and worldwide. It allows the ever-changing needs of this community to be at the forefront of our team’s minds as they work towards improving the quality of life of those who live with EB in Ireland.

“It was lovely to finally meet people, chat and talk about EB and the need of patients.” – a member of our wonderful EB Expert Panel.

Research

As a result of the panel, DEBRA Ireland’s revised research priorities include:

• Wound Healing
• Pain Management
• Gene Therapy
• Medical Devices – with a particular focus on an EB shoe
• Psychosocial/Mental Health studies
• Cell Therapy

And the research we fund/support must have direct patient impact by either…

• Furthering the development of a potential treatment
• Identifying potential targets for a potential treatment
• Contribute to the overall knowledge of EB to help develop future treatments
• Improve quality of life for those with EB and their families

Family support

Our Family Support Team had a number of specific projects they wanted the panel to provide input on for the coming year, like developing an Online EB Hub. The EB Hub will be an online platform where families will be able to easily access information and support on EB. The platform will be shaped collaboratively with the panel.

The psychological and social impact of EB has shaped the decision to create a support hub for EB in Ireland, as the Family Support team recognise there are many more aspects of life that can be impacted by EB in addition to the physical challenges. It is hoped that the Hub will provide quick and easy to access supports, while being modern and simple to use.

You can download the full report here

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A brave teenager battling a crippling skin disease has thanked big-hearted RTE viewers after more than €325,000 was raised for ‘Butterfly skin’ charity, DEBRA Ireland.

Claudia Scanlon, 19, and DEBRA ambassador Johnny Sexton, generated the huge public donation as they appeared on last Friday’s Late Late Show to talk about the painful and debilitating condition, epidermolysis bullosa (EB). Claudia, from Terenure, Dublin, has the severe form of the genetic disorder, which has left 80% of her body covered in blisters – and needs a wheelchair because it is too painful for her to walk.

She told host Ryan Tubridy that DEBRA Ireland is desperately trying to fund research into finding a cure for the disease, which affects around 300 people in Ireland.

“I was born with a genetic skin condition that affects me both internally and externally,” said Claudia, whose hands and toes are now fused because of the illness.

“It is one of the worst conditions out there and I wouldn’t wish this upon my worst enemy.

“It is a living hell and that is the only way that I can describe it.”

But despite the immense problems caused by her EB, Claudia told Tubridy that she tried to remain positive.

“I don’t want to sit in a corner and cry about it,” she said. “I don’t want to throw my life away. I have a life to live and I want to do the best I can.”

RTE viewers responded on Friday night and over the weekend by donating €325,000 after a link to the charity’s website was broadcast during the show.

“This is a tremendous amount of money, and I cannot thank everyone enough for their generosity,” said Claudia. “This fundraising means so much – not only to me but to the whole EB community.

“The money raised will hopefully help fund a cure. We love you all and can’t thank you all enough.”

During the show, Ireland rugby captain Sexton, who has worked with the charity for 12 years, praised Claudia for her bravery.

“The first thing that you see it how incredibly brave they (EB patients) are.. it makes you feel a little bit bad about yourself when you come home with an injury or after a bad game and you’re giving out about the world.

“What they go through is worlds apart, and their families as well, Claudia’s mum and dad are here tonight and what they do for her is incredibly inspiring.” DEBRA Ireland CEO Jimmy Fearon said he wanted to thank everyone who helped raise the six-figure sum for the charity.

“Once again, the Irish public have shown how incredibly generous they are. We cannot thank them enough,” he said.
Tubridy, on his RTE 1 radio show today, described the public’s response to the fundraising appeal as “extraordinarily generous”.

EB is caused by missing proteins which bind the skin together. As well as funding medical research to find a cure for the disease, DEBRA Ireland also supports patients and their families with day-to-day care and psychological supports.

If you missed your chance to donate, you can still do so at: debra.ie.

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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.”  

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