Drawing attention to Ichthyosis Awareness Month, campaigners claim their skin condition is going misdiagnosed for years, despite often needing just a blood test 

Ichthyosis is a group of skin conditions that affects between 276,000 and 690,000 people in the UK. Yet the country’s leading ichthyosis support group is claiming that awareness is low and too many of those affected are waiting unnecessarily long times for diagnosis. 

The chronic condition is characterised by persistent skin scaling across the body. It can be mild or widespread, with a 50% chance of being passed on genetically. Symptoms include dry or scaly skin, thick or rough skin, blisters, tight skin and skin infections. Its name comes from the Greek term for ‘fish’.

Yet many sufferers go without diagnosis for decades. Diagnosis is usually made through a medical examination, but sometimes needs a blood test or biopsy.

On the back of Ichthyosis Awareness Month in May, the Ichthyosis Support Group, the UK and Ireland’s only charity for those affected, is stressing the human impact of these widespread late diagnoses.

The group notes that patients don’t usually have genetic testing, even though ichthyosis means a gene is missing, and their condition is often dismissed as simply dry skin and easily able to be lived with.

Low awareness and delayed diagnosis 

Currently, there is no cure, so treatment aims to improve the condition of the skin, making it less dry and scaly and more comfortable for the patient. They will usually have to apply emollients or moisturisers twice a day.

“Having the correct diagnosis is important as this can lead to better treatment, eligibility for clinical trials and also, in severe ichthyosis, help with associated complications and prenatal diagnosis if further pregnancies are planned,” notes Edel O’Toole, chair of the Ichthyosis Support Group Medical Advisory Board and professor of molecular dermatology.

The group would like to warn doctors that even milder versions of ichthyosis can have debilitating effects for patients, and the need for speedier diagnosis should be taken seriously.