Scratching beneath the surface of a skin affliction

Scratching beneath the surface of a skin affliction
The Fynn family, including mum Carol, son Spencer, 12-year-old Isabel, who has had incredibly distressing eczema, and dad Andrew.

Young Isabel Fynn has suffered for years from the debilitating itch caused by eczema. Her mother Carol tells Helen O’Callaghan what lengths the family have gone to in order to ease her daughter’s distress.

For seven years, Carol Fynn has watched her daughter struggle with a condition that leaves her skin painfully inflamed, intensely itchy, cracked and covered in cuts. Isabel, 12, has atopic eczema, a non-contagious inflammatory skin condition that affects one in five kids and one in 10 adults here.

It began on Isabel’s knees, elbows and ankles when she was five.

“I remember it most on her wrists. I thought it was a rash and when it persisted I put Sudocrem or some kind of moisturiser on it.”

But it got “very, very bad”, says Carol, also step-mum to Fletcher, 25, and mum to Spencer, 15.

“Her whole body was covered with it, from her eyelids to her ankles. She’d take off her clothes at the end of the day and skin would fall all over the floor.” Isabel got no peace at night – sleep often proved impossible.

“She’d wake, hot, itchy and crying. She’d be scratching and putting herself bleeding.” Dad Andrew would rock her all night and watch TV.

“That went on for 12 months. It seemed like it was forever. It was very distressing. We felt so sorry for her but we were both working and had to be up early the next morning. Sleep deprivation is awful to deal with,” says Carol, a secondary teacher – the family is based in the Cork suburb of Ballyphehane.

Referred to a skin specialist by their GP, Carol learned something “new and clever” – Milton sterilising fluid in Isabel’s bath but neutralised with moisturiser or dermatologically-tested soap. “When Isabel scratched and bled, she was getting infected. This killed infection.”

But the struggle continued. One day in the specialist’s consulting-room, Isabel – covered in eczema and exhausted from lack of sleep – fell asleep in her mother’s arms. It was three o’clock in the afternoon. The specialist immediately decided to hospitalise Isabel.

“She knew we weren’t coping, that we were having a distressing time.” In the hospital, nurses wrapped Isabel like a mummy in zinc bandages and she stayed like that for four days. “She had the baths every day, and all night, for 12 hours, she’d sleep in zinc. She was itchy underneath but it was very hard to scratch – when she left the hospital, she was the best she’d ever been.”

For Carol, her daughter’s hospital stay was a respite – and it was training. “I learned from the nurses how to take care of her. The specialist knew I needed to see how it worked.”

Now in sixth class, Isabel isn’t eczema-free. “She still has very bad patches. They might scar for life because she’s done so much damage by scratching. Her ankles and the backs of her knees are the worst at the moment. She still finds it really hard and cries before falling asleep.

But it has improved – it’s in very specific zones now – and only 10% of people have it into adulthood so there’s a good chance it’ll disappear.”

Carol explains that now Isabel’s pre-pubescent, she naturally doesn’t want to change in front of her mum.

I can’t really be putting lotions on her as I did when she was a child. She’s dealing with it herself. She prefers showers to baths. She has to use a special body wash and straight after a special moisturiser, which she’s supposed to put on twice a day.

"But she’s getting rebellious – she puts it on when she feels itchy. But if she applied it when she isn’t itchy, she’d do better. Sometimes when she’s asleep, I put the lotion on her.”

Carol feels eczema has impacted her relationship with Isabel.

“Sometimes it’s all I talk to her about – did you put on your lotion? That’s boring to her. I try to have special days when we don’t talk about it.”

Like Carol, many families dealing with eczema are carrying significant burdens.

A new survey of those living with or caring for people with moderate-severe a topic eczema released by Irish Skin Foundation shows over 40% cut household expenditure due to cost of managing the condition.

One-quarter of those surveyed spends at least €2,300 annually on doctor’s fees, over-the-counter management products and prescription treatments.

Interrupted sleep is another hidden burden of this debilitating condition, with 86% of children and 84% of adults reporting the problem.

Additionally, one in four parents and carers of children with eczema say their child misses one to two days of school a month due to their condition, with over one-third of children and two-thirds of adults avoiding exercise, activities and sport.

La Roche-Posay research shows 57% of parents have very little information regarding their child’s optimum skincare routine – some say they’ve no awareness at all.

Atopic eczema happens when the skin’s protective barrier is weakened, allowing moisture to be lost – and irritants and allergens to pass through skin more easily. Consultant Dermatologist with La Roche-Posay, Dr Niki Ralph says regular emollient therapy – e.g. use of specially-formulated moisturisers – is the cornerstone of eczema management and treatment.

“This is important before the weather cools and central heating’s turned on again in the autumn – both of these can challenge vulnerable skin and lead to flares,” says the The Irish Skin Foundation’s CEO David McMahon.

For simple tips and resources to establish new skin barrier care routine, visit www.IrishSkin.ie. The charity’s free helpline has specialist dermatology nurses who provide one-to-one guidance about a range of skin conditions/problems.

La Roche-Posay’s Lipikar skincare range is designed for very dry to eczema-prone skin for everybody including babies. With minimalist formulas that work in partnership with the skin, the Lipikar range relieves skin discomfort and, used regularly, decreases re-occurrence of flare-ups.

An ‘Atopic Eczema Panel Discussion’ by medical experts and patient advocates takes place at Irish Skin Foundation’s skin-health information/awareness event, SkinSideOut, on November 16 at Science Gallery, TCD, Dublin. Tickets available via Eventbrite.

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