Orphanet: Disability
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ORPHA:575  Muckle-Wells 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
Hearing/listening
Permanent limitation
Severe
Accessing higher education
Permanent limitation
Severe
Taking part in community life
Permanent limitation
Moderate
Taking part in community life
Transient limitation
Moderate
Playing with others
Permanent limitation
Moderate
Playing with others
Transient limitation
Moderate
Socializing
Permanent limitation
Moderate
Socializing
Transient limitation
Moderate
Practicing sports
Permanent limitation
Moderate
Practicing sports
Transient limitation
Moderate
Participating in the arts and cultural activities
Permanent limitation
Moderate
Participating in the arts and cultural activities
Transient limitation
Moderate
Travelling
Permanent limitation
Moderate
Travelling
Transient limitation
Moderate
Frequent
Temporality
Severity
Learning to read
Permanent limitation
Severe
Learning to read
Permanent limitation
Moderate
Learning to write
Permanent limitation
Severe
Learning to write
Permanent limitation
Moderate
Learning to calculate
Permanent limitation
Moderate
Reading
Permanent limitation
Moderate
Writing
Permanent limitation
Moderate
Calculating
Permanent limitation
Moderate
Focusing attention
Permanent limitation
Moderate
Memorizing and retrieving
Permanent limitation
Moderate
Thinking and reasoning
Permanent limitation
Moderate
Making decisions/taking initiatives/finding solutions
Permanent limitation
Moderate
Standing
Transient limitation
Moderate
Walking long distances
Transient limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Moderate
Getting good quality sleep
Transient limitation
Moderate
Handling stress, responsabilities, emergencies and ensuring one's safety
Transient limitation
Moderate
Handling emotions and mood
Transient limitation
Moderate
Making/keeping friends
Permanent limitation
Moderate
Making/keeping friends
Transient limitation
Moderate
Maintaining family relationships
Permanent limitation
Moderate
Maintaining family relationships
Transient limitation
Moderate
Dealing with strangers
Permanent limitation
Moderate
Dealing with strangers
Transient limitation
Moderate
Engaging in and maintaining intimate relationships
Permanent limitation
Moderate
Engaging in and maintaining intimate relationships
Transient limitation
Moderate
Engaging in sexual relationships
Permanent limitation
Moderate
Engaging in sexual relationships
Transient limitation
Moderate
Shopping
Transient limitation
Moderate
Cooking/preparing meals
Transient limitation
Moderate
Doing housework
Transient limitation
Moderate
Looking after/helping others
Transient limitation
Moderate
Attending preschool
Permanent limitation
Moderate
Attending mainstream school
Permanent limitation
Moderate
Attending school in an adapted mainstream/special environment
Permanent limitation
Low
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Moderate
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Low
Engaging in paid work in a standard environment
Permanent limitation
Moderate
Engaging in paid work in a standard environment
Transient limitation
Moderate
Seeking employment
Permanent limitation
Moderate
Seeking employment
Transient limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Performing professional tasks
Transient limitation
Moderate
Undertaking a complex/multiple task
Permanent limitation
Moderate
Undertaking a complex/multiple task
Transient limitation
Moderate
Carrying out daily routines
Permanent limitation
Moderate
Carrying out daily routines
Transient limitation
Moderate
Occasional
Temporality
Severity
Seeing/watching
Permanent limitation
Severe
Staying awake
Transient limitation
Moderate
Controlling one's own general behaviour
Transient limitation
Moderate
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.

Temperature
Source: Pr Isabelle KONE-PAUT[Expert]
Last update: 03/12/2018

Additional information

Specialised Social Services

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