I have just been diagnosed as having Ichythyosis X-Linked in the last few weeks.
I am 46 years old man and have suffered since birth on my legs, arms and trunk; the worst by far being on my legs. My first memory of my condition (unknown other than dry skin) was having coal tar oil baths they were disgusting and didn’t help other than making my skin feel awful. I hated wearing shorts as a boy as everyone looked and commented on my skin. School was dreadful especially P.E. at secondary school I was kept at a distance and treated as being different. I have always scratched my skin to the point of bleeding and have many scars on my legs from this immensely satisfying form of therapy that drives my family mad. I pick and scratch for hours on end until I have to wear tight clothing so I cannot get in to scratch any more.
Some remedies offered include Nivea, E45 cream, gels, powders, shower creams aqueous based creams all have no effect on the skin. Mostly they make my skin so soft that I can easily tear the skin by rubbing against something for example the corner of a soft leather settee. I remember once, I was 10 being told to use this particular cream for a week (it didn’t have any effect on me) one day as I was cycling and my leg slipped off the pedal of my bike with trousers on and I stripped a big section of skin off my shin, it bled for ages it didn’t scab over for days. I was keen to not use any more creams.
My parents have been convinced that trips the seaside did help my condition and I have been sent off into the sea as a child in Cornwall / Wales this was a horrible experience when I hated water at the time. It did help at the time I was told and I have found as an adult it really does, I now make sure I swim in the sea whenever I can as it offers instant relief and up to 8 weeks of near normal skin.
As an adult, my wife and children have got used to my bad skin, itching and scratching habits and we have developed a routine for ‘hoovering me up’ after bad sessions, particularly in the summer months.
I have always put up with this skin condition / disease but recently I have become more concerned about the future as I after a trip to Hungary I scratched my legs and contracted an infection in my right leg and was hospitalised for a week and 3 months on antibiotics to clear the problem wearing surgical stockings to prevent me scratching. As mentioned earlier I was on a visit to the doctor a couple of weeks ago (unrelated to skin problem) he notice my legs were particularly bad and I was asked if I would like to be referred to a skin specialist; I said ok can’t do any harm, the specialist gave me Ichythyosis x-linked as the clear diagnosis and asked if wanted a prescription for some moisturising creams… I nearly screamed at her but was happy that finally after 46 years of misery and no useful help to date I have a diagnosis and have seen photos of other people with identical / similar condition.
I continue to look forward to my annual sea swimming (in warmer waters of southern France now thankfully) as this will offer a few months of relief from itching.