Living with Ichthyosis

What is it?

Ichthyosis is the term used to describe continual and widespread scaling of the skin. It may be inherited (genetic) or acquired during life.1

Lots of people have dry skin conditions (such as eczema or psoriasis) and are often patchy  which tend to come and go. By contrast, in ichthyosis the scaling is continuous and usually affects the whole body. Most types are congenital, meaning that they are present at birth, and inherited, meaning that they result from genetic changes, so they may run in families.2

There are many different types of ichthyosis. Some are listed in the table below. This isn’t a full list of all forms of ichthyosis and there are a number of other syndromes. More information on the different types of ichthyosis can be found on the Ichthyosis support group.2

Who gets ichthyosis

Inherited ichthyosis is due to a single genetic trait which is passed on either from one or both parents, or develops as a new error in the gene very early in foetal life. It can be mild as with ichthyosis vulgaris, or severe.1

Acquired ichthyosis can develop at any age due to a number of medical problems, such as kidney disease.1

Ichthyosis vulgaris is the most common type of inherited ichthyosis, affecting 1 in 250 people3. Signs and symptoms include:
  • Skin may appear normal at birth 3
  • skin gradually becomes dry, rough and scaly, usually before the age of 1 3
  • the face and the bends of the elbows and knees are not usually affected 3
  • limbs may develop fine light-grey scales 3
  • the skin on the palms of the hands and soles of the feet may have more lines than normal and be thickened 3
  • the child often also has eczema 3
  • symptoms are often worse when it's cold and dry and improve in warm, humid conditions – this means they may be more noticeable in the winter than the summer 3

What causes ichthyosis?

The skin is made up of millions of tiny cells joined together to form our protective covering. Skin is a living organ grows, adapts and responds to damage.  It is constantly shedding and being replaced, and these processes are controlled by genes.2

Ichthyosis is caused by mutations in genes that control the formation of skin cells, so they don’t function properly2. In some forms of Ichthyosis some skin cells are formed at a faster rate than they are needed and they pile up on the skin surface, thickening the skin2. In other forms, the cells are produced at the normal rate but instead of brushing off when they reach the surface, they cannot become detached from the cells beneath them and so they build up in layers. Either way, the end result is ichthyosis. 2

How to manage ichthyosis?

There is no cure for ichthyosis at present, but it is possible to manage the symptoms. 2 The main aim of treatment is to improve the condition of the skin by making it less dry and scaly and to  relieve discomfort.

In the milder types of ichthyosis the main treatment is regular (at least twice daily) application of moisturisers or emollients. 1,2. These are most effective when applied on wet skin within a couple of minutes of having a shower or bath. For children with ichthyosis  parents will need to help with regular application so that they get into the habit of applying them. 1

Always wash your face, hands and body with a hydrating cleanser such as QV Gentle Wash or QV Bath Oil and apply a moisturiser such as QV Cream or QV Skin Lotion immediately afterwards. when skin is particularly red and sore, use QV Intensive Ointment. This is ideal for leaving on skin overnight,

If skin is particularly painful or if you are unsure whether the skin is infected, you should talk to your healthcare professional for a management solution.

1.     British Skin Foundation. Ichthyosis. [internet] (cited 29 August 2019). Available from https://www.britishskinfoundation.org.uk/ichthyosis

2.     Ichthyosis Support Group. Ichthyosis Overview. [internet] (cited 29 August 2019). Available from http://www.ichthyosis.org.uk/ichthyosis-overview/

3.     NHS Conditions. Ichthyosis. [internet] (cited 29 August 2019). Available from https://www.nhs.uk/conditions/ichthyosis/

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