Daily Mirror (Northern Ireland)
My girl has lived with eczema since an infant but help is out there
Mum says support group has been a lifeline for Miya, 12
THE family of a girl with chronic eczema has hailed an outreach group for helping their daughter feel comfortable in her skin.
Miya Galloway, from Ballynahinch, Co Down, was diagnosed as an infant and has severe chronic eczema , covering most of her body and particularly affecting her hands.
Now 12, Miya has been under the care of the dermatology team at the Royal Belfast Hospital for Sick Children from just four months old.
She has to moisturise with heavy emollients throughout the day and at times wear special cotton gloves.
Mum Lindsey said: “When Miya was four weeks old she developed a rash on her face and we started off with usual treatments.
“At four months old we got a diagnosis - chronic eczema - and thought we just get the right medication and it will stop but it’s been far from the case.
“Her skin has affected every aspect of Miya’s life. She didn’t sleep through the night until she was 10 as she would wake with hot, flared skin.
“She will scratch herself raw in her sleep, so her dad and I loosened the fittings in her bed so it would make a noise when she started to attack her skin and we could wake and stop her.
“By the time she was in primary school she started to notice she was different and other children wouldn’t want to hold her hand.
UNDERSTANDING
“A teacher who didn’t know about her condition told her to remove her ‘silly gloves’. The skin was infected and removing them caused the skin to rip off.”
But a trip to Disneyland Paris helped Miya become proud of her eczema gloves. Lindsey said: “She said ‘they wear gloves like me’ and she told all her friends she was like a Disney princess with her gloves.
“The team said we had exhausted all other options but there had been good results with dupilumab.
They wrote to the governing body and it was agreed that Miya could be the case study in Northern Ireland and was the first child to be put on it.” Miya has seen positive results and today although she still needs to moisturise throughout the day, she now uses steroid creams much less frequently.
The f amily f ound out about Eczema Outreach Support through when Lindsey told the doctors how isolated she felt.
She said: “It has been a life line, having eczema to the severity that Miya has it isn’t common and I felt like I was going through it alone. But there are lots of other families going through it, and it’s been a great support.”
Today i s World Atopic Eczema Day - a campaign to boost understanding of the condition and improve treatment.
Eczema Outreach Support is a registered charity for families with children under the age of 18 who are struggling to cope.
It is celebrating a £500,000 Lottery grant allowing it to roll out activities across the UK. The cash will also fund new partnership work to improve the lives of sufferers through better healthcare and school support.
She didn’t sleep all night until she was aged 10 LINDSEY GALLOWAY CO DOWN