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ORPHA:163703  Febrile infection-related epilepsy syndrome

:: Activity limitation/participation restriction is described according to the Orphanet Functioning Thesaurus, derived and adapted from the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY, WHO 2007). The provided information is assessed from the whole patients’ population affected by the disease, receiving standard care and management (specific and/or symptomatic management, prevention and prophylaxis, devices and aids, care and support). Functional consequences are organized by their frequency in the patients’ population. This general information may not apply to specific cases. Some difficulties reported here can occur with a different temporality or severity degree, and others that are not listed can nevertheless arise.

 Loss of an ability
Very frequent
Temporality
Severity
Acquiring language
Permanent limitation
Severe
Learning to read
Permanent limitation
Severe
Learning to write
Permanent limitation
Severe
Learning to calculate
Permanent limitation
Severe
Reading
Permanent limitation
Severe
Writing
Permanent limitation
Severe
Calculating
Permanent limitation
Severe
Focusing attention
Permanent limitation
Severe
Making decisions/taking initiatives/finding solutions
Permanent limitation
Severe
Receiving spoken messages
Transient limitation
Severe
Handling objects (fine hand use)
Permanent limitation
Severe
Washing oneself
Permanent limitation
Severe
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Severe
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Severe
Driving
Permanent limitation
Severe
Attending mainstream school
Permanent limitation
Severe
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Severe
Accessing higher education
Permanent limitation
Severe
Undertaking a complex/multiple task
Permanent limitation
Severe
Carrying out daily routines
Permanent limitation
Severe
Practicing sports
Permanent limitation
Severe
Travelling
Permanent limitation
Severe
Frequent
Temporality
Severity
Seeing/watching
Transient limitation
Severe
Hearing/listening
Transient limitation
Severe
Memorizing and retrieving
Permanent limitation
Severe
Thinking and reasoning
Permanent limitation
Severe
Being aware of time
Permanent limitation
Severe
Being aware of space
Permanent limitation
Severe
Receiving spoken messages
Permanent limitation
Severe
Receiving messages in sign language
Permanent limitation
Severe
Receiving nonverbal messages
Permanent limitation
Severe
Receiving written messages
Permanent limitation
Severe
Speaking
Permanent limitation
Severe
Producing messages in sign language
Permanent limitation
Severe
Producing nonverbal messages
Permanent limitation
Severe
Writing messages
Permanent limitation
Severe
Participating in a conversation
Permanent limitation
Severe
Using communication devices
Permanent limitation
Severe
Standing
Permanent limitation
Severe
Sitting
Permanent limitation
Severe
Bending
Permanent limitation
Severe
Transferring oneself
Permanent limitation
Severe
Maintaining a standing position
Permanent limitation
Severe
Maintaining head position
Permanent limitation
Severe
Reaching and catching objects
Permanent limitation
Severe
Lifting and carrying objects
Permanent limitation
Severe
Walking short distances
Permanent limitation
Unspecified
Walking long distances
Permanent limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Severe
Dressing/undressing
Permanent limitation
Severe
Falling asleep
Permanent limitation
Moderate
Staying asleep
Permanent limitation
Moderate
Getting good quality sleep
Permanent limitation
Moderate
Staying awake
Permanent limitation
Moderate
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Severe
Handling emotions and mood
Permanent limitation
Severe
Controlling one's own general behaviour
Permanent limitation
Severe
Controlling one's own eating behaviour
Permanent limitation
Severe
Moving around outside the home
Permanent limitation
Severe
Using transportation
Permanent limitation
Severe
Interacting with other people
Permanent limitation
Severe
Making/keeping friends
Permanent limitation
Severe
Maintaining family relationships
Permanent limitation
Severe
Dealing with strangers
Permanent limitation
Severe
Engaging in and maintaining intimate relationships
Permanent limitation
Severe
Attending school in an adapted mainstream/special environment
Permanent limitation
Severe
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Severe
Undertaking a simple task
Permanent limitation
Severe
Taking part in community life
Permanent limitation
Severe
Playing with others
Permanent limitation
Severe
Socializing
Permanent limitation
Severe
Participating in the arts and cultural activities
Permanent limitation
Severe
Occasional
Temporality
Severity
Regulating urination
Permanent limitation
Severe
Regulating defecation
Permanent limitation
Severe
Eating
Permanent limitation
Severe
Drinking
Permanent limitation
Severe
Moving around within the home
Permanent limitation
Unspecified
Not defined
Engaging in sexual relationships
Household
Work and economic life
Environmental factors

:: Following are the environmental factors that should be addressed in order to improve the functioning or limit the restrictions deriving from this disease.

Food
Temperature
Light
Day/night cycles
Source: Dr Andreas VAN BAALEN[Expert]_Association Paratonnerre[Patient organization]_FIRES USA[Patient organization]
Last update: 22/07/2015

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