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WATCH: ‘Butterfly disease’ dead Claudia (14) speaks with idol Johnny Sexton about affliction and accessible attention

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Independent.ie

Claudia Scanlon (14) from Terenure in Dublin has a astringent anatomy of the ‘butterfly skin’ ache EB (epidermolysis bullosa), which leaves 80pc of her anatomy covered in wounds.

https://www.independent.ie/irish-news/health/watch-butterfly-disease-sufferer-claudia-14-speaks-with-idol-johnny-sexton-about-pain-and-public-attention-37443739.html

https://www.independent.ie/videos/article37440745.ece/2b56f/AUTOCROP/h342/3161738-1540046909168130.jpg

Claudia Scanlon (14) from Terenure in Dublin has a astringent anatomy of the ‘butterfly skin’ ache EB (epidermolysis bullosa), which leaves 80pc of her anatomy covered in wounds.

This abundantly aching abiogenetic action causes the bark layers and centralized anatomy linings to abscess and anguish at the aboriginal touch.

One of alone 300 bodies in Ireland with EB, Claudia has to be bandaged about from arch to toe. Her anatomy is 80pc covered in bandages, which accept to be afflicted every two days, an acutely aching action that takes several hours. Despite the difficulties, parents Liz and Gary try to ensure that Claudia, who is a Junior Cert adherent at St Louis High School, Rathmines, has as accustomed a activity as possible.

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“As a boyish girl, she wants to be out in association but she can feel larboard out and she has been actual aching by actuality excluded,” said Liz. “EB dictates her life, she can’t alike booty article as simple as a bus adventure on her own, as she can’t accident a abatement or actuality bumped into.

“With amusing media today, aggregate is about appearances, which can be actual tough, but below the bandages is a jailbait with agnate emotions, account and interests as others her age.”

Claudia afresh got to accommodated one of her antic idols, rugby brilliant Johnny Sexton, for a one-on-one account about arresting with affliction and a host of added absolute questions.

Breakthrough

Today, which marks the alpha of National EB Awareness Week, it was appear that a new gene analysis advance will accord new achievement to bodies active with epidermolysis bullosa (EB).

Researchers at UCD accept produced a gel-like analysis absolute a alive gene which, they hope, will anatomy activity bark and badly advance healing.

The gel, which inserts a activity gene into bark cells, has been apparently accurate to assignment with one fiber of the disease.

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Researchers are accustomed out added studies to see if it will assignment on accommodating bark and on added forms of EB.

The best allotment of this analysis is that it does not absorb aching skin-grafting procedures or risks associated with viral treatments in carrying activity genes to the skin.

The gene analysis analysis has been agitated out over the accomplished nine years by Professor Wenxin Wang amid NUIG and UCD, and has been part-funded by EB alms Debra Ireland through accessible donations.

Debra Ireland provides circadian abutment for EB patients and their families and additionally funds analysis programmes to acquisition bigger treatments and accessible cures for EB.

“If this analysis is successful, bodies active with EB will be able to administer a gel to their bark and it will advance anguish healing and the basic of activity skin,” said Debra Ireland arch of analysis Dr Sinead Hickey.

“This is not a cure, but this gel could accomplish bark stronger and could advance activity assumption as a result.

“It may additionally anticipate wounds in the aboriginal place. If there are no wounds again patients will ache beneath infections, feel beneath pain, beneath crawling and advance beneath bark cancer.

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“A biologic aggregation has now taken over the development of this gel, but it would not accept appear about after the accessible donations which adjourned the aboriginal three years of research.”

This anniversary is National EB Awareness Anniversary and Debra Ireland is allurement the accessible to get involved.

“Quite simply, EB is still classed as an cureless disease, and through accessible abutment we are allotment gene analysis analysis in the achievement of a advance in either affliction and bark management, or in aggressive the basis account itself.

“There are analysis projects agnate to Professor Wang’s out there, cat-and-mouse to be funded, which could accompany us a footfall afterpiece to a cure.

“The acknowledgment lies in acknowledging technology that works on genes and alteration DNA, and advisers such as Prof Wang and his aggregation accept apparent us that the acknowledgment is there if we accumulate acknowledging EB advisers in their work.”

Text the chat BUTTERFLY to 50300 in adjustment to accomplish a €4 donation.

Irish Absolute

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