EB: ‘It’s a very isolating condition for a teenage girl’

For most of us, the social distancing which protects against Covid-19 is a temporary, if unpleasant, experience. For 16-year-old Claudia Scanlon, it's her life.

The transition year student is wrapped in bandages from the neck down, is peg-fed, and is dependent on her power chair for mobility, although she can walk short distances.

She’s highly vulnerable to chronic infection and even relatively strong physical contact can result in immensely painful wounds as a result of her condition, which is often described as “the worst disease you’ve never heard of”.

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‘I’d love people to learn from their experience of social isolation to be more accepting and more inclusive of people who might be going through this all the time – like me,’ Claudia says.

Claudia has epidermolysis bullosa, or butterfly syndrome, a severe, rare, skin-blistering condition which leaves the epidermis as fragile as the wings of a butterfly to the extent that even gentle contact can cause devastating wounds.

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There is no cure, and people with the condition have a high risk of developing an aggressive skin cancer. The treatment for EB consists of managing the symptoms.

The teenager is one of the estimated one in every 18,000 babies born in Ireland to be affected by EB – and one of more than 500,000 people worldwide with the condition.

As a result, says her mother Liz, since birth Claudia has led "a very isolated life" at the family home in Terenure, a life Liz describes as "a one-man show".

“If someone banged into her, her skin would shear off. People are not always that open to her. She struggles for friendship but she has the same wants and desires as any 16-year-old,” observes Liz.

However, one thing that Claudia Scanlon does not lack is courage.

An only child, the teenager is a pupil of St Louis High School in Rathmines, now closed as part of the restrictions around the Covid-19 pandemic.

For years she has routinely travelled to school by bus on her own during term, and attended her classes with the support of a special needs assistant.

However, she has always had to be careful – in first year, another student accidentally walked onto the back of her shoe and she fell. The rough contact with the ground severely damaged the skin on her hands, and the soles of her feet were also badly wounded. EB, Claudia says, affects virtually every aspect of her life, from moving around to social interaction.

“I cannot trip or fall because what I’d get would not be a graze; it would result in wounds all over my body that would take up to a month to heal. I’ve grown up with it but it can still be tough,” she says.

The condition inevitably restricts her ability to mix with her peer group. Three full afternoons a week, for example, are swallowed up by the crucial process of bandage-changing, a highly labour-intensive and often painful procedure which can take up to four hours.

“I’m not always able to go out after school,” explains Claudia. EB is tough, she reflects, it has left her socially isolated.

“Adolescence is hard for anyone but adolescence with a disability on top is very hard,” she quips, adding that while many of her schoolmates are inclusive towards her, “some girls can be bitchy and bratty and don’t want to hang out with someone who is different”.

“You just get on with it. I cannot just hang out with my friends like other girls can. I don’t have a lot of friends in school.”

People with EB can have very small airways, so it's hard for us to swallow and it can cause blisters in our oesophagus

There’s no such thing as hanging out in the local pizza parlour either, as the condition also affects how she eats. Although she can consume one meal a day, the teenager is peg-fed overnight to boost her calorie intake.

“People with EB can have very small airways, so it’s hard for us to swallow and it can cause blisters in our oesophagus,” she explains. “I can eat anything, it’s just that I have to be careful eating it.”

The phenomenon of Covid-19 and the social distancing which has resulted from the advent of the virus has not changed Claudia’s life much, apart from her no longer being able to go to the cinema or visit her local shopping centre, two activities she greatly enjoys.

However, she is hoping that, having experienced the loneliness of social distancing for themselves, others will emerge from the experience with a new mindset. “I’d love people to learn from their experience of social isolation to be more accepting and more inclusive of people who might be going through this all the time – like me,” she observes.

And it quite literally has been all of her life. Claudia was born with this genetic condition, which cannot be detected in the womb. She was diagnosed with EB by the time she was a month old.

“Her skin started to break down almost immediately,” recalls her mother. “Her toes fused. She ended up with chronic wounds all over the body by the time she was four or five. Her hands have contracted as well,” says Liz, a part-time quality control manager. “I accepted many years ago that the disease is in control here. Everything the doctors warned us about has happened.”

Liz echoes Claudia’s wish for people to reach out more to her daughter, whom she describes as “amazing”.

“I can dress a wound and burst a blister, but I cannot help with her social isolation; that is something only she can do and it is very hard. I hope the Covid-19 crisis will make people more aware of what it’s like to live in isolation like Claudia. Her life is very much a one-man show. It’s a very isolating condition for a teenage girl.”

Debra Ireland, the organisation which supports families with EB, is asking people to help fund its work. (Text Butterfly to 50300 to donate €4.) The group says its biggest concern is the implication of Covid-19 entering a household where there is a person with the condition.

There would "suddenly be nobody to do the bandages, because a parent could be out of action and our nursing support teams cannot go in there", says Debra Ireland's chief executive, Jimmy Fearon.

“This comes at a time when certain people with EB are in the category of vulnerable as far as the virus is concerned, and the level of services required is greater than normal.”

The organisation has had to cancel a number of fundraising events which, he warns, is a cause for concern because of the heightened need to provide critical services to families.