Orphanet: Disability
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ORPHA:2953  Musculocontractural Ehlers-Danlos 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
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Severe
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Moderate
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
Moderate
Seeking employment
Permanent limitation
Severe
Taking part in community life
Permanent limitation
Moderate
Practicing sports
Permanent limitation
Severe
Travelling
Permanent limitation
Moderate
Frequent
Temporality
Severity
Walking long distances
Permanent limitation
Moderate
Moving around outside the home
Permanent limitation
Moderate
Using transportation
Permanent limitation
Moderate
Driving
Permanent limitation
Moderate
Shopping
Permanent limitation
Moderate
Doing housework
Permanent limitation
Low
Looking after/helping others
Permanent limitation
Low
Attending preschool
Permanent limitation
Moderate
Attending mainstream school
Permanent limitation
Moderate
Attending school in an adapted mainstream/special environment
Permanent limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Playing with others
Permanent limitation
Moderate
Socializing
Permanent limitation
Moderate
Occasional
Temporality
Severity
Standing
Permanent limitation
Moderate
Transferring oneself
Permanent limitation
Moderate
Walking short distances
Permanent limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Moderate
Moving around within the home
Permanent limitation
Moderate
Shopping
Transient limitation
Complete
Doing housework
Transient limitation
Complete
Looking after/helping others
Transient limitation
Complete
Attending preschool
Transient limitation
Complete
Attending mainstream school
Transient limitation
Complete
Attending school in an adapted mainstream/special environment
Transient limitation
Complete
Learning a profession (vocational training/apprenticeship) in the standard environment
Transient limitation
Complete
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Transient limitation
Complete
Accessing higher education
Transient limitation
Complete
Engaging in paid work in a standard environment
Transient limitation
Complete
Engaging in paid work in a supported/sheltered environment
Transient limitation
Complete
Seeking employment
Transient limitation
Complete
Taking part in community life
Transient limitation
Complete
Playing with others
Transient limitation
Complete
Socializing
Transient limitation
Complete
Practicing sports
Transient limitation
Complete
Travelling
Transient limitation
Complete
Source: Expert
Last update: 06/07/2018

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