How to handle the stigma of Ichthyosis
Wednesday May 23, 2018 by
Four year old Alfie, who lives in Lichfield with parents, Catherine and Lee, and his two year old sister Rene, has a form of the rare and painful skin condition, called Epidermolytic Ichthyosis.
Here his mum Catherine tells his story and explains how, as a family, they have learnt to handle cruel comments and stares:
“When Alfie was born, his skin looked raw and fragile and he had a ten piece size raw patch of skin on his tummy. The midwife started to rub him down with a towel, as they normally do with newborns, but his skin just peeled off. He looked as though someone had poured boiling water on him.
“The room immediately filled with nurses and then they took Alfie away to put him in an incubator. We weren’t allowed to see him for the first few hours and had no idea what was going on. We were so scared and I was just out of my mind.
“Due to Ichthyosis being so rare, the nurses weren’t able to make a diagnosis, so they sent photos of Alfie to Birmingham Childrens Hospital, where they have a specialist dermatology unit. From here they were able to diagnose him and provide some guidance on his treatment.
“On the day he was born, a pediatrician from the Queenss Hospital Burton came to visit Alfie. I remember he said to me ‘he won’t have much of a life’ and my heart dropped. It was probably the worst thing he could have said. I just wanted to make my son’s skin feel better.
‘I knew he was in pain, but at that moment I didn’t know how I could help. He cried so much, he actually lost his voice.”
After six days in hospital, Catherine and Lee brought Alfie home wrapped in bandages. The family were given a range of emollient products to help to sooth his skin and were instructed to use them every two hours when changing his bandages.
Catherine added: “We were overwhelmed and as first time parents we didn’t understand how to manage Alfie as a newborn, let alone with his specialist requirements. But we just went into auto pilot.”
“It was hard work, but now at the age of four, Alfie’s skin condition has improved and we have adjusted to the special treatment that he needs. His skin will still shed, but it doesn't shed at the same rate, so it’s thicker and less fragile.
“Something we will never adjust to, however, is the hurt that strangers can cause. Not only have I experienced people staring at Alfie, but adults have said things like: ‘What’s wrong with your baby? You should take your baby to hospital’. Comments like that really make me really angry.
“The older he’s got the less obvious his skin condition is and sometimes it looks more like severe eczema. But I carry information cards about Ichthyosis with me and I hand them out to educate people on the condition.
“Aflie’s school are really helpful and have helped to teach the children about his skin condition. His friends and his teachers look out for him too, but there have been times where children have said things that have really upset him.
“To some extent, I expect children to say things, because they don’t understand, but I am always shocked when adults have something to say - it can be very upsetting.”
Catherine and Lee have educated Alfie about his skin condition, by using books such as Elmer the Elephant and the True Blue Hand. Catherine is also a member of the Ichthyosis Support Group, a charity that helps to support those with the skin condition and their families.
“It helps to be in touch with other families of children with Ichthyosis. It can be a very isolating condition, so when you meet other people, you feel less alone. We all share stories and advice and help to support one another.”
Catherine kindly shared Alfie’s story with QV, as part of our ‘A Hand to Hold’ campaign, to help educate people about the condition and to make them aware of the detrimental impact their words can have.