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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.   A treatment that works for one person doesn’t necessarily work for another. Because of this, treating ichthyosis can be a process of trial and error, and it can be frustrating and may take some time to find something that works best for you.

There may be times when your ichthyosis gets you down, and motivation to carry out the daily routines involved may be difficult at times, parents may become frustrated when trying to motivate a child with ichthyosis. However, it’s important that you maintain your treatment routine and regularly see your doctor to review your condition, and be honest about your treatment routine. It’s the best way of making sure you get to try as many treatments as possible, and find one that makes a difference to you.

Most people with ichthyosis regularly see a dermatologist to help them understand and manage their condition. Ichthyosis treatments are usually topical (applied to the skin) which can come in different formulations (creams, ointments, gels, etc). If your ichthyosis is severe and difficult to manage the thickness of the skin, your doctor may prescribe oral medication such as retinoids to help reduce the scaling, or if various types of topical treatments aren’t as effective used alone.

Caring for your ichthyosis is important to both your physical and mental health and if you have any concerns about caring for your ichthyosis you must talk to your doctor.

In this section

Condition Specific Information

Non Bullous Ichthyosis (CIE) Factsheet CongenitalIchthyosiformErythorderma(CIE) Ichthyosis describes dry, thickened, scaly or flaky skin. There are at least 28 different ichthyosis subtypes,…

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Inheritance and Genetic Testing Information

Prenatal testing for ichthyosis Ichthyosis is normally caused by changes in the genes we inherit from our parents, but can also develop…

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Treatments and Caring for Ichthyosis

European Guidelines for the Management of Congenital Ichthyoses (Epidermal Differentiation Disorders) Use these Ichthyosis Guidelines to help educate, share care guidance, educate…

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Information For Parents

Childrens Questions Download the Children's Questions Factsheet To find out more about the ISG or become a member please get in touch…

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Talking to Your Doctor

Dealing With Doctors The ISG Medical Advisory Board receives many different questions and comments from members. Some are factual questions about diagnosis…

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Prescribing Issues

Letter to GP re Prescribing of Emollients and Prescribed Skin Care Treatments Our Medical Advisory Board have provided a letter for you…

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General Information

DLA PIP Letter Claiming DLA/PIP It's important when completing applications to understand what the assessors are looking for in an application. Key…

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Online Discussion Sessions

Here you will find comprehensive summaries of our online discussion sessions and information about upcoming discussions.These sessions are organised and brought to…

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Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

A guide to the new ichthyosis and palmoplantar keratoderma naming system – Epidermal Differentiation Disorders (EDDs) This article explains the recent changes in how we name…

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