“Have you spent too long in the sun?”…. If I had a pound for every time I got asked that question I would be able to buy a small island in the sun. Having Lamellar ichthyosis can seem like a lot of things, with the usual comparison to sun burn,eczema, psoriasis and even acid burns. The reality is that although it looks like a lot of things, it is its own unique condition which very people know about.
My name is Anthony and I have learned in my 30 years on this planet that a brave face is a lot harder put on when your skin is constantly falling off. I don’t mean the little bits that every “normal” person sheds, I mean the flakes that you can peel off like wallpaper from parts of your body, the need to sweep the floors and Hoover twice daily, the dreaded black clothing that looks like you have been hit by a snow storm at the end of day. You are probably getting the picture now that my skin is a little different.
It may be different and sometimes painful, but I have never let this bother me to a point of where it has stopped me doing what I want to do. I have lived a very fulfilling life, as a child, teenager and an adult.
As an adult now I work full time for Western Power Distribution, the UK’s largest power distribution company. As you can imagine I come into contact with new people on a regular occurrence both work colleagues and the general public and I feel because of my confident approach it doesn’t distract that I do my job as good as any body else.
From birth they could see something was wrong. I was born in September 1982, looking like a cling film wrapped lobster. This is known as Collodion baby or red baby as I have heard it called. I’m not going in to the what and wherefores of my early days as I think it is more important to tell you how being a little different doesn’t mean it has to stop you.
The basics of my condition are straight forward. I cannot sweat, my body has no way of cooling itself down. I have to recognise the signs that I am getting to hot and take action, eg find shade, drink or bath in cool water and maybe stop what I was doing for a short time. With the inability to sweat comes the annoying issue of almost no moisture in the upper layers of my skin. This means it is very flaky. I have to constantly apply moisturisers to my whole body and use special shampoos to remove thick scales from my scalp. I have learned to cope with my condition over time but every so often the constant need to bathe, moisturise, remove dead skin, keep cool can get you down. I will probably spend at least three hours everyday treating my skin, no days off I’m afraid, it has to be done. That’s the tough part, it doesn’t leave you alone. But then again my attitude is quite clichéd, I could be worse off. Apart from my skin I am perfectly healthy, so I just get on with it.
I find my attitude towards my condition has helped me over the years, a lot of people comment that they didn’t realise I had a condition this severe at first because I was so outgoing. I have participated in any sport I can from a very young age. Captained football, rugby and cricket teams at school, won trophies in martial arts, gained good grades through normal schooling, enjoy swimming, going to the gym and playing squash. If the chance to try something is there I will do it. You only get one chance so make it worth while.
2012 was a very defining period in my life, not only did I marry my beautiful wife Kelly but we also had our first child, Sonny. Two things will stay with me forever becoming a father, the first time I heard my son cry and the moment I looked at him and said… his skin is fine.
Although I am probably the best person to offer advice to my child if they did get ichthyosis, I am glad I don’t have to.
I am learning all the time about my condition, the different types of products available and what I can do to manage it even better. The biggest influence on my condition, apart from my Mother, who cared for me with every passing minute until I was in my teenage years, has been the Ichthyosis Support Group (ISG). The ISG have suggested different treatments to try, adapt some routines and been there for a chat when needed. But one thing that has made the most difference to me are the ISG support days. Meeting other people that share my experiences and frustrations, being able to compare treatments with the same sufferers and make new friends is fundamental to coping with condition. I like to think that I provide a positive response to having this condition and if I can make someone feel a little better about themselves, then it makes me a happier person.