Mum with disability refused much needed parking permit: 'The government to focus on needs, regardless of the disability'
Amanda Nugent and her son Ruaidhrí are two of 30 extended family members with epidermolysis bullosa. Picture: Elle Nugent Traynor
Amanda Nugent (47) has epidermolysis bullosa (EB), a rare genetic skin condition, commonly known as ‘butterfly skin’ due to its extreme fragility. Those with EB lack the essential structural proteins that bind the skin’s layers together, resulting in painful blisters, tears, or breaks in the skin.
Nugent, who lives in Wexford, grew up unaware of the cause of the painful blisters that would appear on her hands and feet. The birth of her son Ruaidhrí in 2013 was the catalyst for finding out it was EB.
“When Ruaidhrí was born, he had blisters all down his back, and on his bottom area,” she recalls. “I remember seeing them and thinking, ‘He has what I have’, but I never knew what I had.”
Ruaidhrí was referred to Crumlin (now CHI), where he was diagnosed with EB Simplex (EBS). Of the four main types of EB, EBS is the most common, affecting 70% of those diagnosed. A year later, Nugent herself got a diagnosis of EBS. Her siblings also have EB, as do numerous members of her extended family, who together account for 30 cases, or 10% of all cases in the country.
EB is rare. According to Debra, the national charity patient-support organisation for people living with EB, around 300 people in Ireland have the condition, with the worldwide estimate at 500,000. While genetic research is ongoing, there is currently no cure.
As children, Nugent and her siblings just got on with life as best they could. “We would’ve suffered with many blisters on our feet, and anytime we had any friction on our hands, or rode a bike, we’d get blisters,” she says. “But we never let it affect us. We still played football, but we’d suffer an awful lot afterwards.”
They thought “it was just us and our wider family that had it” as EB “was never talked about and there was no information out there for us”.
Nugent gets blisters on her hands, feet “or anywhere where there is friction”.
Perimenopause and the attendant decrease in collagen production have further compromised her already fragile skin.
Nugent and her son have the same type of EB, but Ruaidhrí’s is higher on the spectrum of severity. Ruaidhrí recently turned 13, and growing older has increased the pressure and friction on his feet and elsewhere, leading to more blistering. “He’s suffering an awful lot more. His blisters are getting a lot worse. To see your child going through the pain and torture, and missing out on time with his friends because he can’t walk, is very difficult.”
Heat, humidity and sweating all worsen EB, so Ruaidhrí’s much-loved sporting activities are confined to the colder months, Nugent explains. “We can’t play any sports or even go for walks in the summer. Once the weather turns warmer, that’s the end of our being outside until October, because the blisters come up a hundred times quicker with the heat.”
Despite the daily adversity, Ruaidhrí “tries not to let things stop him”, Nugent says. He loves gardening, but using tools results in blisters.
Nugent, who is Ruaidhrí’s carer, also works as a holistic and complementary therapist and teaches yoga to children. “I’m working for myself because when you are working for other people, it’s very difficult.”
Nugent’s form of EB often isn’t visible, and people can be insensitive or, worse, dismissive, equating the blisters she suffers with one caused by an uncomfortable shoe.
“People just don’t understand,” she says. “They don’t have the awareness of what’s going on.”
Hopefully, increased awareness is imminent with , a documentary featuring the friendship of Emma Fogarty, who lives with the most severe form of EB, and actor Colin Farrell, which premiered at the recent Dublin International Film Festival.
Since Ruaidhrí was born, Nugent has found Debra to be an “amazing” support, but points out that despite there being 30 people with EB in Wexford, “everything is in Dublin” — services, specialists, meetings — which is hard. Along with Debra and members of the EB community, Nugent travelled to Dáil Éireann last October to highlight the issues people like her face, including a lack of access to costly dressings (while Ruaidhrí’s are supplied, Nugent has to buy her own), recognition for carers, and access to parking permits.
The danger of infection is ever-present. Plasters, bandages and creams have to be constantly changed and reapplied, but even with vigilance, blisters sometimes become infected, which is “so painful”.
An infected blister on her foot makes walking agony, but Nugent says,
For Ruaidhrí, who is an only child, an infection on his foot has devastating effects: crutches cause blisters on his hands, so he is confined to the couch, unable to interact with his friends, go outdoors, or play sports until it clears up.
Despite the difficulty EB causes with walking, Nugent is not entitled to a Disabled Person’s Parking Permit. “Parking is one of the biggest challenges for people living with EB,” says Mary Nicholson, head of advocacy for Debra.
“One of the current questions asked to qualify for a parking badge is ‘can you walk 150 metres’, but that’s too simplistic … the impact of walking that distance is huge, as the resulting blisters and pain might prevent them from engaging in everyday activities, like work, sports, or social activities.”
“I’ve always been refused it,” Nugent says. “Everyone I know [with EB] has been refused it.”
She adds, “If you ask me to walk [for] more than five minutes, I’d have blisters and I’d be limping back to the car. But because I’m not ticking the questions that are on the [application form], I’m refused this every time, even though I have a disability.”
Debra is campaigning for change for those living with EB, highlighting their clear need for access to a parking permit. “We would urge the government to focus on needs, regardless of the disability, and to widen the current limiting criteria,” Nicholson says. “This essential aid should not come down to how hard an individual can push.”
For Nugent, having the right to park in disabled bays would mean less walking, less pain and an easing of the constant stress of searching for a suitable space.
“It would make my life so much better,” she says. “I wouldn’t be going home with blisters and I wouldn’t be suffering the next day.”
- Rare Disease Day is taking place on February 28
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