Managing ichthyosis, whether for yourself or a child, often feels like a struggle. From finding the right emollients to explaining temperature sensitivity to schools or workplaces, having clear, expert-backed information can make a difference!

That’s where the European Guidelines for the Management of Congenital Ichthyoses come in.

The patient version is a powerful advocacy tool for patients and parent-carers. Here is what you need to know about who created it and how you can use it to get the best out of your care.

Who Created the Guidelines?

These guidelines were developed by a international team of experts, including top UK clinicians, like ISG Medical Advisory Board Chairman Professor Edel O’Toole.

Importantly patient voices were at the heart of the process. The Ichthyosis Support Group (ISG) and representatives from other patient organisations across Europe, worked alongside genetic skin disease doctors to ensure these guidelines focus on practical, daily living - turning complex medical knowledge and research into real-world support for our community.

3 Ways to Use the Guidelines in the UK and Ireland

You don’t need medical knowledge for these guidelines to help your family. Here is how you can use them: 

1. Self-Advocacy at GP and Appointments 

Ichthyosis is not always rare, such as Ichthyosis vulgaris (FLG-nEDD) but many types are and it is usually perceived as rare so non-specialist doctors (like general practitioners) might not encounter it often. You can reference the guidelines during appointments to: 

Explore new options: Ask about updated treatment plans and direction. 

Request expert referrals: If your current plan isn't providing enough relief, use the guidelines to support a request for a referral to a specialist genetic skin disease doctor or clinic. 

2. Looking Beyond the Skin 

The guidelines emphasise that ichthyosis affects far more than just the outer layer of skin. They highlight monitoring for wider wellbeing, including: 

  • Ears & Eyes: Preventing ear canal blockages (which can affect hearing) and managing eyelid tightness (ectropion). 
  • Overheating & Itch: Strategies for temperature regulation and managing chronic itching. 
  • Mental & Emotional Health: Ensuring access to psychological support and genetic counselling for families. 

3. Educating Schools, Caregivers, and Workplaces 

Parent-carers often face the extra hurdle of educating teachers or nursery staff.  Also, for adults with ichthyosis, the guidelines reinforce the necessity of daily care routines, bath times, and overheating precautions, giving you official backing when requesting accommodations at school or work. 

View and/or download the guidelines 

Published:

Author: Mandy Aldwin