13 May 2015

Ichthyosis Awareness Month - Rebecca, Aidan and Caleb's story: "The XLI doesn’t really bother me but people do make fun of it sometimes."

Even though Rebecca grew up with a brother who has X-linked Ichthyosis (XLI), she was still unaware of the effect it would have on two of her sons, Aidan and Caleb. Rebecca shares her sons’ story about the daily and long-term effects of their XLI in both the physical and emotional forms.  The family is from Australia.  Aidan is a swimming champion - he's done so well this year!

Meet Rebecca, Aidan and Caleb.

"I grew up in a house where my brother had X-linked Ichthyosis (XLI) but I don’t think it even crossed my mind when I was having children that my boys might also have XLI.

My first son was born via emergency C-Section at 42 weeks after a failed induction.
Aidan was born bright red with dry, scaly skin all over his body. These scales started to peel off him within a day, and it still never crossed my mind that he had XLI.

Within a few weeks he had lost the red colouring.

When my mum came to visit she noticed Aidan was just like my brother, and helped me to understand how much moisturiser was needed. At every nappy change out came the cream, and we would cover his entire body to try and help him have some comfort.

By the time Aidan was a toddler, his skin was looking better through summer, and very dry over winter. We consulted a skin specialist who helped us with products for bathing and skin care.

Aidan is extraordinarily pale, with white hair, and almost translucent skin.

Aidan has also struggled with eczema. As time has gone on, his symptoms have almost disappeared except for over winter when he starts to get mild scales again, but on his skin they are barely noticeable. Aidan however still has scaling on his scalp which requires treatment.

His brother has been a different story though.
Caleb was born at 36 weeks via emergency C-Section.

Caleb had soft skin as a baby and toddler, and whilst we always used oil in the bath and no soap or shampoo ever, he never seemed to have any dryness.

However by the time he was 5 or 6 years old, he started getting dry skin. This developed into thick scaling on his legs and mild scaling on his arms and with the skin on his back and belly feeling rough (a bit like sandpaper) but with no scales.

Caleb has struggled over time with the scales as they are dark, and they get itchy and can bleed between the scales.

Caleb has had a hard time at school on occasion, as he gets called names and can be self-conscious about his legs.

He is much better over summer as we live at the beach and the salt water and sand has helped immensely.

Over winter however, playing sport in the cold air dries him out.

He still has oil baths and we have a good cream to use on his skin every day before school.

Both boys were diagnosed with XLI by a geneticist several years ago and they took us through all the other complications that can occur with this condition.

One of the boys had an operation early on to fix testes and a large hernia. The surgeon told us what to watch for as they get older, as they are both at higher risk of testicular cancer.

Both boys also have autism spectrum disorder problems with their immune system (despite being fully vaccinated they retained none of the immunity and get sick a lot), low muscle tone, a connective tissue disorder and have had learning disorders. I am not sure if these particular issues are related to their condition because my other two kids do not have these issues and they also do not have XLI."

This from Caleb:

“The XLI doesn’t really bother me but people do make fun of it sometimes. But when people tease me a lot I don’t really notice any more, as I am used to it now and I always have my friends around me. When my scales come off it really hurts and when I scratch my skin it leaves big marks.”

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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