My name is Sarah I’m 33 yrs old (June 2013) I have Lamellar Ichthyosis (LI) and here’s my story.
I do not know what age I realised I had a skin condition all I can remember is I was different because my skin came off and was dry. I had to spend what seemed like forever in the bath and by the end of the bath half of me would be left in it!
I also remember going to Lourdes In France – There was a lot of fundraising in my community to send me there with my local church. It was with the Handicapped Children’s Pilgrimage Trust I was 7yrs old and the first one in my family to go on an aeroplane. Everybody hoped that trip would cure my LI. Me, on the other hand had the time of my life not really understanding the hope that was pinned on the trip.
The hardest time of my life was comprehensive school. I will be honest I hated it because of the bully’s and I loved it because that is where I met my true life long friends (nutty friends) who I believe have made me the person I am today.
There are a few things/times that really stick out in my mind “potato, tomato, pasty, flaky” these are all words associated with food you would assume, No these are names I was called during my years in Comprehensive . I hated changing during P.E because it would be like a snow shower when I took my clothes off, but I had the support of my “nutty friends” and family and they supported me throughout. I was not going to let bullies get me down or ruin my life! I became a PREFECT in my last year in lower Comprehensive and I was put forward for this because I stood up against bullies when they were bullying another girl in my year.
My parents always treated me “normal” and again I believe this is what made me stronger, they always encouraged me to take part in things like go on school trips abroad, go out with my friends – They did not let me hide away, when at times I wanted to. I still never felt comfortable talking about my skin though, if people would ask I would get embarrassed, or make a joke.
I always used to worry about meeting new people especially boys when I was younger, I could see all my friends starting to go out with boys and I thought the day would never come for me. They say things come to those that wait ….at 19 I met my husband. I met him like any other person would… in a pub! It was really nerve racking thinking how was I going to explain to him about my skin condition but I just bit the bullet and told him on our 2nd date. The 3rd date he knew more about it than me! We have been together 14 years.
When I finished University my parents thought it would be really hard for me to find a job, I applied for a call centre Job with Lloyds Banking Group (because I love talking to people and it was a sit down job) and got it straight away. I have worked for the bank for 10 years and have worked my way up to Team Manager. Again I never thought this would happen as I thought people may not have respect for me however my team love me (their words not mine ha ha ) and I have a lot of respect from my peers. I asked my Manager and team to describe me and these are the words they use: pleasant, approachable, funny, trustworthy, happy, full of fun, positive, dedicated and loyal.
My skin has gotten better with age, probably because I am more self conscious now than when I was younger, so I try to keep it looking as good as possible. I spend a lot of time soaking myself in the bath …and the bathroom is where the magic happens. I have learned to cope with my skin but until last year there was still a part of me that was not entirely comfortable talking about it openly. It’s still not easy to explain to people and to get them to understand. If I am going on a night out I am in the bath ALL DAY, and this is what people do not realise, because my skin just looks a bit dry, they do not understand or appreciate what goes on and the time I put in behind the scenes.
I start work at 6.30am so to be ready I get up at 3:45 in the morning. I then have an hour and half bath. I have to admit I often fall back to sleep : ) I then plaster myself head to toe in Aveeno® cream and when that’s soaked in I again plaster myself in white soft paraffin. When I get home from work I then have another hour and a half bath as by this point my skin is extremely dry and often itchy and uncomfortable. This is my routine everyday. I have started to put Aveeno® lotion on my head after a bath and leave this in overnight to try and get my scalp as good as the rest of my body. (I have only started this over the last week, every other day).
I cannot express how I feel now about my skin since I have become a member of the ISG.. I talk openly about LI and show my pictures to EVERYONE ha ha. This is all down to the support and encouragement I have had from the ISG. I really feel like they understand and want to support me. I am more open now than I have ever been and I think this has made people around me more relaxed to ask me questions instead of just staring! I am seeing myself in a very positive light and the ISG has opened up a whole new family to me. I went to my first Family day this year and when I was coming from there I wanted to stamp my feet like a 2 yr old because I did not want to leave ! I really can not thank the ISG enough for making me see all of what makes me SARAH GRIFFITHS-LITTLE