A new Medical Alert Card will help pharmacists better assess people living with the rare skin condition epidermolysis bullosa (EB), as outlined in this article from Debra Ireland, the national charity which supports those with EB.
Epidermolysis bullosa (EB) is an incurable and extremely painful genetic condition caused by the absence of essential proteins which bind the skin layers together, meaning even mild contact or friction causes severe blistering.
In extreme cases, the condition is life-limiting and requires extensive, painful bandaging which must be changed — sometimes daily — to prevent infection.
Debra, the national charity supporting the on average 300 people who endure it in Ireland, says the EB Medical Alert Card will support pharmacists, many of whom may never have encountered a patient on account of EB’s rarity.
“We would hope that this card will help pharmacists better navigate any healthcare needs that people with EB may present with,” said Debra’s Head of Strategic Communications, Alejandra Livschitz; “The skin of those living with EB is extremely delicate, the reason it is often referred to as the ‘Butterfly Skin’ condition. We feel the information card will be beneficial to pharmacies in cases where skin needs to be examined. Simple healthcare procedures such as sterilising skin, injections, applying or removing bandages are something most of us take for granted, but can be agonising for those with EB.”
Ms Livschitz said, “The cards, produced for adults and children, explain what EB is and once shared with health professionals and pharmacists, are designed to facilitate a better understanding of the condition and open up a conversation where extreme care is taken with the person’s skin. Even in cases where a pharmacist is familiar with EB, in the case of EB simplex, for example, they may not recognise it in the person because there may be no visible scars or blistering.”
The cards are also designed for use in GP surgeries, hospitals and other healthcare settings.
They are the latest addition to Debra’s community-based work supporting patients and families throughout Ireland. The charity also has an active Family Support Team, meeting families in person and arranging phone contact, provides financial support and psychological help — a vital component of care to address the impacts on mental health a life-long condition can have on those living with it or caring for someone with EB.
In many cases, carers — often the parents of children with EB — need to stop working to care for a loved one, and with Debra’s help, have to navigate State supports. Debra is on hand to prepare children for major milestones, even producing booklets informing teachers and students about EB ahead of the arrival of a child with the condition, into primary or secondary school.
Propelled into the international headlines last October when Hollywood star Colin Farrell ran the Irish Life Dublin Marathon to mark his friend Emma Fogarty’s 40th birthday, the charity received almost €1 million in donations — funds which will fuel pioneering research which could transform the future for everyone with EB in Ireland. Laois woman Emma, who also battled cancer twice, is Ireland’s longest surviving person with the most serious form of EB, her parents told at her birth that she was unlikely to survive her first week.
She joined Farrell in her wheelchair for the last four kilometres of the race, her EB aggravated by every bump and pebble on the road.
A month later, then Health Minister Stephen Donnelly said annual, ring-fenced funding of €670,000 would be provided to build HSE-led, sustainable care plans to alleviate some of the heavy burden for those living with the lifelong condition.
Debra had previously argued that the existing homecare provisions across Ireland were fragmented, fragile and not properly co-ordinated. While welcoming the announcement as a major leap forward, Debra insists it will pursue the commitment and still relies on public support for critical research, emotional, psychological and social care. “It has been so difficult for rare diseases to cut through the noise of other charities, especially when the numbers we care for are so small,” added Ms Livschitz; “That’s why events such as the Run to 40 are so important in raising our profile and making EB part of the national health conversation.”
Ms Livschitz said, “Ireland’s network of pharmacists can play a crucial part by familiarising themselves with the condition, to be on alert when they are presented with the card and research further information on our website, debra.ie. Self-education is the best gift that they can give the EB community, allowing them to gain a real insight into what a person with EB goes through every day and will make patients’ visits to their local pharmacist smoother and stress free. It would be great, also, if they can transfer the knowledge they have gained to their staff.”
If you would like a free information leaflet about EB posted to your pharmacy, please contact alejandra.livschitz@debra.ie with your pharmacy’s name, full postal address and Eircode. You can donate to debra at debra.ie/donate.
Seamus Graham says explaining his EB to medical professionals is often an ‘exhausting process’. The Galway man believes the Debra-produced Medical Alert Cards will helping paramedics, doctor, nurses and pharmacists
learn more about the agonising skin condition.
“I have cardiomyopathy related to EB, and when I’ve had ECG tests before, I’ve had to ask people not to use ECG stickers on my skin or at least to let me take them off myself, but it has not happened,” said Mr Graham, from Knocknacarra.
“I hope with the card, whoever admits me to hospital can say to everyone involved in my care that I have EB and what that means. I also feel that in the next 10 years or so, we will reach the point where more people know what EB involves. But until then, I’m very happy to have this card in my wallet.”
The idea for the licence-style information card came from Debra’s EB Expert Panel, which raised concerns about how frustrating communicating EB to others can be for those living with it.
“Each card contains information to help medical staff who may have limited knowledge of EB, along with contact details for EB services,” said Deirdre Callis, Head of Family Support at Debra.
“The cards, which are free, are designed to help paramedics take the right action during emergencies to help people living with EB to explain their condition more easily.”
More information on the cards, including ordering information, is available at debra.ie.
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