Table 2 Assessment matrix of the skills of parents of children with ichthyosis after a therapeutic education session

Knowledge about social rights

The Memorandum of Special Reinforcement (100%) is an allowance paid for by the MDPH.

My child, who is affected by ichthyosis, can benefit from the Education Allocation of Handicapped Children.

There is no leave available to temporarily stop working to take care of the sick child.

Knowledge about the measures to facilitate the enrollment

PAI means individualized support and integration plan at school.

It is necessary to build an MDPH case to be granted a special needs assistant.

When the child is absent for medical reasons, he is entitled to educational assistance at home.

Knowledge about the scope of the various professionals

The social worker can renew a care order.

The rehabilitation exercises help to maintain good mobility.

An occupational therapist can assess the speed of writing.

Knowledge about pain management

At the hospital, my child may benefit from EMONO - Kalinox® to avoid pain during his cures.

I can increase the dose of analgesics without medical advice.

Identifying the various topical treatments

Emollient creams are needed to moisturize my skin.

A single tube of therapeutic cream can be used for the whole family.

The moisturizer does not expire.

Therapeutic creams and moisturizers are used in the same way.

Knowledge about the disease

Ichthyosis is due to a thickening of the hypodermis.

The application of cream can relieve itching.

I can ask for an emergency appointment with a physician if I find my child's skin unusual.

In one family, there are several possible modes of inheritance.

There are ichthyoses for which the mutated gene is not known.

Anyone can benefit from genetic counseling.

Children with ichthyosis shouldn't be monitored only by hospital doctors.

Because of their disease, children affected by ichthyosis can not enjoy playing music.