Orphanet: Disability
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ORPHA:3463  Wolfram 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
Seeing/watching
Permanent limitation
Severe
Hearing/listening
Transient limitation
Moderate
Reading
Permanent limitation
Severe
Receiving messages in sign language
Permanent limitation
Complete
Receiving nonverbal messages
Permanent limitation
Complete
Producing messages in sign language
Permanent limitation
Complete
Producing nonverbal messages
Permanent limitation
Complete
Regulating urination
Permanent limitation
Severe
Regulating defecation
Permanent limitation
Moderate
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Moderate
Moving around outside the home
Permanent limitation
Moderate
Using transportation
Permanent limitation
Severe
Driving
Permanent limitation
Complete
Engaging in and maintaining intimate relationships
Permanent limitation
Severe
Engaging in sexual relationships
Permanent limitation
Complete
Shopping
Permanent limitation
Severe
Doing housework
Permanent limitation
Moderate
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Severe
Accessing higher education
Permanent limitation
Severe
Engaging in paid work in a standard environment
Permanent limitation
Severe
Engaging in paid work in a supported/sheltered environment
Permanent limitation
Severe
Seeking employment
Permanent limitation
Severe
Taking part in community life
Permanent limitation
Severe
Socializing
Permanent limitation
Severe
Practicing sports
Permanent limitation
Complete
Participating in the arts and cultural activities
Permanent limitation
Complete
Travelling
Permanent limitation
Severe
Frequent
Temporality
Severity
Reaching and catching objects
Permanent limitation
Severe
Lifting and carrying objects
Permanent limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Moderate
Cooking/preparing meals
Permanent limitation
Severe
Looking after/helping others
Permanent limitation
Moderate
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Moderate
Occasional
Temporality
Severity
Learning to read
Permanent limitation
Moderate
Standing
Permanent limitation
Moderate
Bending
Transient limitation
Moderate
Walking long distances
Transient limitation
Moderate
Making/keeping friends
Transient limitation
Moderate
Cooking/preparing meals
Permanent limitation
Moderate
Doing housework
Permanent limitation
Severe
Doing housework
Transient limitation
Low
Looking after/helping others
Permanent limitation
Low
Attending mainstream school
Permanent limitation
Moderate
Attending school in an adapted mainstream/special environment
Permanent limitation
Low
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Low
Accessing higher education
Permanent limitation
Moderate
Seeking employment
Permanent limitation
Low
Handling money/managing one's own budget
Permanent limitation
Low
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
Humidity
Light intensity
Light quality
Sound intensity
Sound quality
Source: [Expert]
Last update: 01/07/2019

Warning

The documents contained in this web site are presented for information purposes only. The material is in no way intended to replace professional medical care by a qualified specialist and should not be used as a basis for diagnosis or treatment.