Committed to the ongoing provision of an information network and support structure for individuals and families affected by ichthyosis

Caring For Ichthyosis

There is no cure for ichthyosis, but it can be treated and managed. There are many types of ichthyosis and each type is unique to each individual and depending on the type, may be inherited differently.

Published:

Author: Liz Dale

Fundraise for the Ichthyosis Support Group

Set up a fundraising page on the ISG website. Using our online form will be the easiest way to get sponsorship from far and wide and the collecting is done for you – so no chasing up sponsors!

Published:

Author:

Target amount: £0.00

Amount raised: £1,132.98

Meet our members

Some of our members have generously shared their personal stories of living with ichthyosis. These stories feature many types of ichthyosis from a wide range of people.

Published:

Author: Mandy Aldwin-Easton

Impact of ichthyosis

3 hrs

is the average time people spend a day treating their skin

45

is the collective number of different emollients used by members

97%

of people stated having ichthyosis affects more than just their skin

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New stories

  • ISG Cake Toppers

    Buy Ichthyosis Support Group and 25th Anniversary cake toppers at a discounted rate from Edibilis. Read more

  • Mindfulness research study

    Are you a parent or carer of a child with ichthyosis aged under 16 years old? Would you like to participate in this research by taking part in an online mindfulness course? Read more

  • An investigation into memory, cognitive function and mood in ichthyosis

    The effects of genetic changes associated with ichthyosis on memory, cognition and mood in being investigated, and we need you to to participate in the latest research. Read more

  • Summary of Ageing with Ichthyosis Discussion

    Ahead of a new research project some ISG members discussed their concerns about ageing with ichthyosis. Read more

  • Ageing in Ichthyosis Research Study

    As we age with ichthyosis we have questions about how our skin is changing, our bodies are changing and living with the condition as we age. We are working in collaboration with Cardiff University to investigate this in detail. Please participate in our 30 minute survey. Read more

  • Sunscreen Use in Ichthyosis

    Sunscreens are used to reduce the risk of sunburn and reduce the risk of skin cancer. They also reduce skin ageing and skin darkening. Ideally sunscreen should be applied all year round as the sun’s rays can still penetrate through clouds in winter. Read more

Latest events

  • Managing Resistance and Stress in Children and Young People

    Does your child resist or get upset over having their treatment done? Do you find it difficult to get a balance between caring for your child and not generating upset? Join this discussion. Read more

  • Challenge 25

    Sign up to Challenge 25. Pledge to walk, jog or run 2.5 miles a day, dancing for 25 minutes, or baking 25 cakes to sell for Ichthyosis Support Group Read more

  • Thames Bridges Trek - 25km

    In our 25th Anniversary Year, celebrate with us on Saturday 10th September on a 25km across London's iconic bridges. Join our team today by signing up! Read more

  • Children's Camps 2022

    The residential activity camps are designed to be exciting and fun whilst encouraging social interaction and promoting personal development for children affected by ichthtyosis aged 8-16 years. Read more