I am now 51 years old….just. I have had ichthyosis all my life. It is part of me and I live with it. It makes me unique. Sometimes it frightens me, because I and others do not know it is going to “behave”, but usually I cope with it. This is my story.
When I was born, my mother realised my skin was unusually dry and scaly, at the time the GP referred her to a Dermatologist. Apparently he was super. He diagnosed ichthyosis, but I have no idea of what sort and sent us home with 2 recipes. Both recipes were for the local pharmacist to make up in his room at the back, one was a skin cream and the other was a cream for my scalp. I can remember the smell of that yellow cream, and how in cold days it seemed to pull my skin, but that once warmed it spread on thickly and greasily, but it worked. I assume the one for my head worked too, but at that age my parents liberally creamed it on!
I carried on and only remember it being an issue when we had swimming lessons when I was about 8years old. The chlorine in the water would sting and of course time was short so there was no time for a quick shower or cream. I can’t remember being teased about it at school, perhaps because it wasn’t obvious, but perhaps because I was outside a lot and my skin is healthier outside.
At 11 years old, it all exploded. I had bad acne and it looked dreadful, felt dreadful and did affect my confidence. So this resulted in another referral to a dermatologist. He prescribed Calmurid cream with uric acid. I have never looked back. I still use it when my skin is bad, because it works on severe chapping across all the seasons even if it does sting! I think during my teens, I may have had less confidence than many of my peers, and it may have been due to my self consciousness about my skin, but we are a close family so did a lot of things all together.
Through university I was lucky enough to work abroad. I spent 2 months every summer in Italy. Ice creams, pasta, pizza and…. perfect skin! I had to exfoliate (I was working outside on an archaeological dig) and used sun screen daily but it was smooth, did not burn and looked and felt normal. That effect lasted for a couple of months on my return to the UK, the damp and cold always seem to affect it.
I became a teacher and continued to go abroad on holidays in the spring to counteract the damp spring UK weather. Unfortunately I caught chicken pox one year from a lovely 11 year old. She was very poorly and had to go to hospital. I was very poorly too and ended up being off work for 2 months… not because of the chicken pox but because it turned my skin into raw-meat. The Doctor had a shock when he finally saw me and I was prescribed strong hydro-cortisone, which thins the skin and makes it more vulnerable to sunlight. But it did heal it.
All my adult life I have had to have my ears syringed regularly and the nurse on my last visit said that it was probably exacerbated by my ichthyosis. I wore contact lenses for 8 years, but my eyes became too dry to wear them all day so I gave up. These are just things I have got used to. Glasses are fine for me: I like gardening, sewing patchwork and yoga so specs are ok.
I have married and now live in the North of England. I have found living in a cooler part of the UK hard; it is very windy and can be damp. It is colder than the Midlands where I come from originally. So I now have a mixture…. Calmurid cream for bad episodes and Eucerin cream as an alternative. When my skin is good I experiment with other
ideas and have tried: Sainsbury’s Argan oil and body soufflé (wonderful perfume), Dove’s body crème (thick and effective), Boots Sanctuary Body Crème for mums and I am exploring Holland and Barrett’s Dr Organics range at the moment. I do think if you can use a variety it is good for you.
My husband copes with it most of the time! He has to exfoliate my back when I can’t reach it. He creams it too. He was not sure about the greasy blob next to him at night to start with – but has got used to it. He is just glad I can control it and it does not cause too much discomfort.
In September 2013 I was diagnosed with non invasive breast cancer. I have had to have major surgery, which has gone well. The cancer is clear, except for annual check ups. But my skin proved to be very thin for the surgeon to work on and has affected the speed of my healing. Is that my ichthyosis? The cortisone cream from 20 years ago? Don’t know. I am taking cod liver oil tablets to feed my skin from the inside and I am using vitamin E oil to feed it from the outside otherwise I swell up. If you see a lop-sided lady in Newcastle in May, with curly hair and a smile – it is me!