PRACTICAL LIFE

 

               This heading wants to give some useful recommendations resulting from the experiment of parents of patients or patients themselves, all affected of an ichtyose. Each one can forward to us, by email or by postal mail, the  improvements which it could make for the comfort of its everyday life and which would not have been already included on our site.

                We point out that the names of drugs or all other produced ancillary medicals, cannot be quoted. Their impact on a patient is often different from one individual to another and can involve at some an aggravation of their state.

 SOCIAL ASSISTANCES.

             Various helps can be obtained from national social welfare which, for the majority, has regional antennas.
               We will quote :
                     - "Les Caisses d’Allocations Familiales" which can grant an “allocation parentale” and, under condition, an “allocation d’éducation spéciale” for the not refunded pharmaceutical expenditure or for the equipment of comfort useful or necessary to the patient in the principal dwelling.
                         Tél. : 08 20 25 06 10 

                    - Sites of "Vie Autonome"(SIVA or SVA), which can bring a financial help for, amongst other things, of the installations in the residence of the patient.
                       List on the web : http://bucodes.enee.en/sva.html 

                    - "L’Aide aux Mères et aux Familles à Domicile" (AMFD), can also intervene for services of guard, school support, household, washing-sharpening, etc.
                       Contact : Fédération nationale d’Aide aux Mères et aux Familles à Domicile (FNAAMFI)
                                       80, rue de la Roquette
                                       75011 PARIS
                                       Tel..    01 49 23 75 50
                                       Fax     01 43 14 02 83

  Useful Or Necessary Installations In The House.

                - Humidifier : allows to give a stable rate of humidity which, when the good adjustment is defined, decreases the dryness of the skin and thus the cracks.
                - Reversible air-conditioning : stabilize the temperature thus avoiding the strong variations whatever the season. A simple air-conditioning, which will thus be activated only at the time of the hot periods, can also be used in condition of to having  a heating for the winter with a powerful thermostat.
                - Softener of water: it sterilizes partly and softens calcareous water, the water untreated causes a cutaneous dryness accentuating the effects of the disease.
                - Anti-UV films on the windows in order to protect the patient from the light. The identical installation of protection, anti-UV black films, is advised on the vehicle used for displacements of the sicked person . 
 

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