Miya first adolescent to use new eczema wonder drug

Miya first adolescent to use new eczema wonder drug

4 November 2020

FROM the age of four months, Ballynahinch schoolgirl Miya Galloway has lived with a severe and often debilitating form of the skin condition eczema.

The 12 year-old has recently began to better manage her condition by becoming the first adolescent in Northern Ireland to get a new injectable medication, Dupilumab.

Since February Miya, who attends The High School in Ballynahinch, is enjoying life at a whole new level, mostly free from the chronic skin irritation which impacts on many areas of her life.

Miya and her mother, Lindsey, have spoken to raise awareness of the new medication which, allow not yet approved in Northern Ireland and in support of the charity, Eczema Outreach Support, which has supported them.

They both know that people’s understanding of what eczema is in their experience compared to actually living with it as in Miya’s case.

“Miya no longer says that eczema is her life, she now says it’s part of her life and that’s a big change,” said Lindsey.

“The amount of time that Miya now takes to cream up during the day and before going to bed is really reduced. Her sleep used to be very broken due to the irritation and the itchiness so she sleeps a lot better. It not only affected her skin but inflamed her joints and affected her mood as well.

“The big improvement today is that Miya can be more independent both socially in feeling confident at staying at a friend’s house or managing her skin herself during the day.

‘There is no cure for eczema and Miya still needs to do her treatments at home to maintain her skin condition but it’s so much better.”

Miya used to take immunosuppressant tablets daily which her mothers said had “horrible side-effects” and made her feel unwell. She still takes steroids, regularly applies heavy creams throughout the day and a weekly bleach bath.

Her four year-old brother, Jacob, also has eczema but her nine year-old brother Ethan doesn’t.

Lindsey described how during major flare-ups of the condition how she and and her husband Steve would be up for most of the night attending to daughter’s cries of pain.

She often finds that people — no matter how well intentioned — do not fully understand what severe eczema can mean to someone.

“It got so bad sometimes that in the morning we would have had to lower Miya gently into a bath to loosen the fabric of her pyjamas which had stuck to her skin overnight,” she said. “To hear your child squeal in pain is something that no parent should ever hear and that happened more than once.”

Miya’s parents were told that she would “grow out” of her condition by the time she was two, by the time she started school and then when she went into her teens.

“Every time the goal posts seemed to be moved but her consultant, Dr Susannah Hoey, at Royal Children’s Hospital in Belfast always told us it was incurable but could be treated. When we thought her skin would calm down by a certain age, it was just the opposite. It kept continually changing.”

It was Dr Hoey who recommended that the family apply to get Dupilumab after having been made aware of it by Eczema Outreach Support.

The medication, injected in every two weeks, is much easier for Miya to deal with — the fact that it has improved the quality of her skin so much has given the child extra confidence.

As she got older, Lindsey noticed that Miya became more conscious of how her skin was and what clothes she needed to hide it.

“Now she doesn’t think about her skin as much and what she needs to wear or not wear,” remarked Lindsey.

“Miya never allowed her skin condition to stop her from doing what she wanted to do but she had to take so many different steps and precautions before she could do it.

“If she was doing Art in school, she would have to make sure that she had her creams done, wore gloves and protected her skin whereas now it’s not just as bad.”

Miya explains that while there have been big improvements, some of the little ones have the biggest impact on her

“It used to be if in school I was moving me hand and arms to make a point, my friends would say to me that my skin looked really sore but now they sometimes forget that I have eczema as it’s not so noticeable and it’s less obvious,” she said.

“There were weeks that I lost out on doing PE at school because of how bad my skin would have been after but now as soon as the school starts its girls rugby team I will join in. I just love sport and I love being involved in things.”

For further information visit www.eos.org.uk