Reaching out to those living with ichthyosis

Are you affected by dry, scaly, inflamed or thickened skin?

Ichthyosis – pronounced ick-thee-o-sis – is a term used to describe continual scaling of the skin. People with the condition have persistently dry, flaky, fish-scale like skin which may also be inflamed or thickened. Ichthyosis affects most, if not all, areas of the skin and is fairly consistent over the years. This is in contrast to other skin disorders, such as eczema or psoriasis, where scaling affects limited areas and changes frequently.

Ichthyosis is rare and can be inherited or develop later in life (acquired). The inherited forms are usually evident at, or soon after, birth and tend to persist throughout life – although some milder types may improve slightly with age. Most people with ichthyosis will have inherited a particular faulty gene from their parents, which affects the rate at which their skin regenerates. This results in either the old skin cells shedding too slowly or the skin cells reproducing at a much faster rate than they can shed old skin. Either way, this causes a build-up of scaly skin. There are many types of ichthyosis. All types cause dry, scaly skin but it looks slightly different depending on which type you have. The most common form of ichthyosis is Ichthyosis vulgaris (pictured). Some of the much rarer forms include:

  • X-linked ichthyosis
  • Non-bullous ichthyosiform erythroderma or Congenital ichthyosiform erythroderma
  • Lamellar ichthyosis
  • Bullous ichthyosiform erythroderma or Epidermolytic hyperkeratosis (EHK)
  • Harlequin ichthyosis
  • Netherton syndrome

Acquired ichthyosis is fairly mild and develops in adulthood. It can be associated with other illnesses. For more information on the different types of ichthyosis visit ichthyosis.org.uk

Looking after your skin

The milder forms of ichthyosis can be managed by regular moisturising, to help alleviate cracking and reduce the build up of skin cells. Your dermatologist will prescribe, or recommend, suitable emollients, including bath oils, soap substitutes and moisturising creams or ointments.

People with severe ichthyosis may need to spend an hour or more a day treating their skin and some may be prescribed retinoid tablets (vitamin A), which lessen scaling in a few forms of ichthyosis. Babies with severe forms of the condition can be quite unwell and may be admitted to a special care baby unit.

The benefits of membership... “I’ve often thought that the name ‘Ichthyosis Support Group’ doesn’t do the charity justice. They do so much more than this, including passing on valuable information to sufferers, keep a track on breakthrough treatments for ichthyosis from around the world and lobby for better treatment for ichthyosis sufferers. Not just a support group, a much needed ‘service’ for those that need it most.” Laura Levy, ISG member and a Mother to Son with ichthyosis.

People who care about ichthyosis…

Formed in 1997, by a group of individuals affected by ichthyosis, the Ichthyosis Support Group (ISG) is here for you if you suffer from the condition or care for someone who does. A registered charity, we are YOUR support group – so why not join us and become a member?

The ISG provides...

  • Information and advice about living with ichthyosis
  • Regular contact to keep you up to date
  • Advice from our Medical Advisory Board
  • Links to a Support Team
  • Access to our annual event – bringing families together to share experiences and to learn about living with ichthyosis

What does the ISG do...

  • Lobby for greater research into ichthyosis
  • Raise awareness of ichthyosis and promote greater understanding within the medical profession
  • Fund research
  • Share information within the European Network for Ichthyosis

ISG Vision

“The ISG is committed to the on-going provision of an information network and support structure for sufferers and families affected by ichthyosis. Associated with that we need to create a greater awareness and understanding within the medical profession, and lobby for greater research into this distressing condition.”

Download The ISG Leaflet

To find out more about the ISG or become a member please get in touch in one of the following ways: 

By Phone

0845 602 9202 

By Email: 

[email protected] 

By Post: 

Ichthyosis Support Group 

PO Box 1242, Yateley GU47 7FL 

Facebook: 

facebook.com/ichthyosissupportgroup 

Twitter: 

twitter.com/ISG_Charity