Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.