What is ichthyosis?
Ichthyosis, pronounced Ick-thee-o-sis (which comes from the Greek word meaning ‘fish’) describes a group of rare genetic skin conditions where the skin is extremely dry and scaly. Lots of people have dry skin conditions (such as eczema or psoriasis) but the dry skin tends to be patchy and comes and goes. In ichthyosis the scaling is constant and usually affects all of the body. Most types are present at birth, and inherited, meaning that they result from genetic changes, so may run in families.
There are over 30 different types of ichthyosis. Different types of ichthyosis are caused by mutations in different genes: in some, skin cells are formed at a faster rate than they are needed and they pile up on the skin surface, thickening the skin. In other forms, the cells are produced at the normal rate but instead of brushing off when they reach the surface, they can not become detached from the cells beneath them and so they build up in layers. The result in either is ichthyosis.
The ichthyoses vary in severity. In the mildest form Ichthyosis vulgaris, as many as 1:80 people may be affected, and at the more severe end of the spectrum, Harlequin ichthyosis, it may affect as few as 1:300,000. People with moderate to severe ichthyosis will need to spend several hours a day caring for their skin and are likely to experience some or all of the following additional problems; overheating – as a result of a reduced ability to sweat; limited movement – dry skin can make it too painful to move certain parts of the body; skin infection – after cracking and splitting of the skin; impaired hearing or eyesight – if skin builds up in the ears or around the eyes. Ichthyosis can be fatal in neonates due to a failure to thrive and infection.
There is no cure for ichthyosis, but it is possible to manage the symptoms.
The aim of treatment is to improve the condition of the skin (make it less dry and less scaly, for example) and to relieve discomfort. This is primarily achieved through regular, intensive (multiple times a day) use of prescribed moisturisers, often with antiseptics or antibiotics, and sometimes with retinoids. In general topical steroids are not suitable for the management of ichthyosis.
Living with ichthyosis
Most ichthyoses persist throughout life. Individuals and families may need psychological and psychosocial support to help them deal with the child's questions or people’s reaction to the appearance of ichthyosis or low self esteem. If you have the condition yourself you may have experienced unhelpful reactions first hand – this can seem hostile and unsympathetic and although it probably stems from ignorance, the effect on you or your child should not be underestimated. Some of the most difficult times are when a child starts school, and potentially has to deal with the staring and teasing on their own for the first time, during the teenage years when it is so important not to be different from your peers, starting a new relationship or a new job.
The Ichthyosis Support Group
The Ichthyosis Support Group (ISG) is supported by a Medical Advisory Board and provides a network of support, including information, advice, opportunities to meet other families and individuals with the condition either online or in person. These opportunities allow people to share experiences, hints and tips for managing the condition. The ISG strives to raise awareness and educate the wider public and medical professionals about the impact ichthyosis has on the lives of those who live with the condition. The ISG also fundraises to support research.
Contact the ISG
Telephone: 0800 3689621
Email: isg@ichthyosis.org.uk
Website: www.ichthyosis.org.uk
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