Ichthyosis

I was born with the genetic skin condition called Bullous Ichthyosis (aka EHK - Epidermolytic Hyperkeratosis). It is just one of many different types of Ichthyosis. Here is an overview of the condition from my own personal experience

So, what exactly is Ichthyosis? And What does it mean to have Ichthyosis and how does it affect you? you’re probably wondering? Well basically, the skin of an Ichthyosis sufferer can vary depending on the type of Icthyosis the individual has. There are over 20 different types of the condition which vary in severity. The type of Ichthyosis I have, Bullous (EHK), is one of the types which is in-between on the scale of severity. Generally though the appearance of the skin is very dry and scaly. And upon first sight many people assume I have either Eczema or Psoriasis and in a way I can understand why. Ichthyosis however, is very thick in appearance on the joints which can crack and split if creams/moisturisers are not regularly applied (the same goes for the rest of the body too), this thickening of the skin in turn can make mobility very difficult. Despite the thickness of the skin it is also very fragile, almost like tissue paper. The slightest knock and the skin tears and breaks leaving it red raw and open to infection.

The skin lacks a specific protein too, which means that the skin is not waterproof. The skin absorbs water in such a way that it leaves the skin white in colour and very soggy. Ichthyosis sufferers also tend to have a high metabolism, due to the lack of protein in the skin. The skin doesn’t sweat properly either, therefore, it is very difficult for an Ichthysosis sufferer to control their body temperature, thus getting very cold very quickly and very hot very quickly.

An Ichthyosis sufferers skin sheds rapidly. Overnight we can shed the equivalent of what a person with ‘ordinary’ skin sheds in two weeks. So vacuuming the house is virtually constant. With Bullous Ichthyosis there are blisters too, which are very painful and very unpredictable as to where and when they will flare up and as to how bad they will be. The blisters make getting around very difficult, and antibiotics and dressings are frequently needed when this occurs. During my childhood Mum had to burst the blisters herself using sterile needles which were provided by my doctor, in order to relieve the pressure of the blisters as it is the pressure which causes most of the pain as regards the blisters. Even now I sometimes have to do the same.

There is no cure for Ichthyosis only treatments. These treatments mainly consist of creams, emollients and in some cases retinoids. My daily routine starts with a bath or shower using emollients twice a day. It then takes a minimum of around 30 minutes just for my skin to dry off, then I have to liberally apply creams all over my body. I then have to let the creams soak into my skin for at least a further 20 minutes or so before I can get dressed. So it can take anything up to two hours for me to just get ready in the morning and ready for bed at night. Over the years I have tried virtually every treatment available for Ichthyosis, and the ones I use now have so far proved to be the best for me.

Thanks for taking the time to read about Ichthyosis here. If you would like further information please feel free to get in touch with me at Friends-of-Ichthyosis@live.co.uk I will also be adding links via here soon... watch this space...