Wheelchair-user with debilitating skin condition set for charity challenge

ireland
Wheelchair-User With Debilitating Skin Condition Set For Charity Challenge Wheelchair-User With Debilitating Skin Condition Set For Charity Challenge
Emma Fogarty was born with EB (epidermolysis bullosa), a condition which causes her skin to blister and wound at the slightest touch.
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By Michelle Devane, PA

A wheelchair-user who has constant pain caused by a rare skin disease is to join a major challenge to help fellow sufferers.

Emma Fogarty was born with EB (epidermolysis bullosa), a condition which causes her skin to blister and wound at the slightest touch.

But she has vowed to overcome the pain for EB charity Debra Ireland’s StepTember fundraiser next month.

Participants are being asked to complete 300,000 steps – 10,000 steps a day during September to raise funds for EB sufferers.

The charity helps people living with EB and their families, as well as fund research to find treatments and a cure.

EB means that painful bandaging must be applied at least every 48 hours, and sometimes daily.

 

Ms Fogarty, 38, from Abbeyleix, Co Laois, told the PA news agency she was determined to take part in the fundraising effort: “Just sitting in a chair or lying in bed can cause me great pain but I’m not going to let that beat me.”

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She needs fresh bandages at least every other day to treat the painful blisters, which cover 80% of her body.

Although she is physically unable to walk and uses a wheelchair after losing a leg to cancer, she said coping with the pain from simply being outdoors is going to be her endurance test.

“I had life-changing surgery and I will never take a step again. But, with the help of my amazing assistant Georgina Herlihy, I will be pushed the equivalent of 10,000 steps a week during September,” she said.

“The challenge for me is to see if I can cope with the ramps, bumps and potholes,” she added.

“Something as small as a pebble in the road can cause a lot of pain and leave my skin damaged if a wheel from the chair goes over one.

“I will definitely have many more wounds at the end of this challenge than at the beginning.”

Last year, more than 1,100 people took part in the fundraiser, raising more than 130,000 euro for the charity.

It supports some 300 people across the country.

Debra Ireland chief executive Jimmy Fearon described Ms Fogarty’s decision to volunteer for StepTember as “truly remarkable and brave”.

“Many people won’t have difficulty completing 10,000 steps a day. But few of us could imagine the challenges Emma faces whenever she has to go outside,” he said.

Ms Fogarty said that without the charity she would not be able to get nurses or research funding resources.

“They deserve all the help they can get,” she added.

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