Articles for the ‘More than just a skin condition’ category


Exploring Experiences of Visible Difference, Intimacy and Intimate Relationships

Researchers at the Centre for Appearance Research at the University of the West of England are conducting a new research study looking to examine the experiences of intimacy amongst people who have an altered appearance or an appearance altering condition. They are looking for participants who are willing to speak to them about their experiences […]

YP Face IT Online advert Final

Online Support For Young People With A Visible Difference

YP Face IT is an easily accessible seven week web-based support for young people aged between 12 and 17 years old living with a visible difference.  Would you like to test it out and provide feedback? Do you have a condition, birthmark, scarring or illness that affects your appearance (the way you look)? Does it […]

Lamellar ichthyosis patient survey

A Qualitative Study of Lamellar Ichthyosis In 2013 Galderma, a pharmaceutical company exclusively focused on dermatology, approached the Ichthyosis Support Group, eni – the European Network for Ichthyosis and FIRST to collaborate on a unique project involving online qualitative research with volunteer members affected with Lamellar ichthyosis. The volunteers would be required to fulfill a two […]

Ichthyosis: My Story

Ichthyosis: My Story – young people talk

Young people with ichthyosis can feel very alone. It is good to know that someone else shares your experience and understands. The ISG’s new booklet is a collection of true stories and photos of real people, both children and adults, with ichthyosis so you can read about how they cope with it. “During 30 years […]


Inquiry into the social and psychological effects of skin diseases – your input needed!

Thank you for all responses received, this survey is now closed! As part of the review of the 2003 ‘Enquiry Into The Impact Of Skin Diseases On People’s Lives’ a new questionnaire has been produced. Part of the review involves a new call for evidence to compare the responses to those received in 2003 with […]

CAR logo

Centre for Appearance Research (CAR) launches FACE IT, a new online support programme for adults who have a condition that affects appearance.

In November 2011, CAR welcomed health professionals from around the UK to the launch of ‘Face IT’, their online support programme for adults with appearance-related distress as a result of a condition, injury or medical treatment that affects their appearance; for example, those with a skin condition such as ichthyosis, with burns or surgical scarring […]


Quality Standards for Dermatology

A document named Quality Standards for Dermatology has been published that has been worked on by a team of representatives from all the stakeholders in dermatology. These standards form the foundations of a good dermatology service for everyone with a skin condition. What will now be worked on are specific standards about different treatments and […]

Iface logo


iFace is a website set up by a charity called Changing Faces for young people aged 11-21 to discuss living with a visible difference, give and get advice and share personal stories. Take a look around and see how other young people are dealing with their experiences.


Satisfaction in Life for Children – Quality of Life Measurement

Paediatric doctors at University College London have developed a quality of life measure  for children aged 4 to 10 years old with a chronic illness such as ichthyosis.  Many conditions, such as ichthyosis, have no specific information or statistics available regarding quality of life. It has been shown through much research, that given the same […]

Dermatology Life Quality Index (DLQI)

Members tell us that often the perception of having ichthyosis, or indeed other skin conditions, by the public and even medical professionals, is that it is “just a bit of dry skin”. In reality to many patients it certainly is not “just a bit of dry skin”. The following information is taken from Cardiff University […]

Living with a visible difference – talking to your child

Talking openly and honestly about appearance from an early age will help your child to feel accepted and valued and build his/her self-esteem. If you can find the words to talk about your child’s ichthyosis, you can: Prepare him/her for handling people’s inevitable natural  curiosity about their appearance with confidence allay unnecessary fears that come […]