Some of our members have generously shared their personal stories of living with ichthyosis. 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 with us? Please complete our form below 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.

If you would like to share your story in the media to help raise awareness of living with ichthyosis please read more about this.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others. Your story can encourage those who see it to get support, or may inspire them to donate or fundraise for us. Some people who’ve shared their story find it a cathartic experience. It makes them feel good to give something back.

Meet our members