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ORPHA:2911  Poland 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
Frequent
Temporality
Severity
Receiving messages in sign language
Permanent limitation
Low
Using communication devices
Permanent limitation
Low
Using communication devices
Transient limitation
Moderate
Reaching and catching objects
Permanent limitation
Low
Lifting and carrying objects
Permanent limitation
Low
Handling objects (fine hand use)
Permanent limitation
Low
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Low
Driving
Permanent limitation
Low
Engaging in and maintaining intimate relationships
Permanent limitation
Moderate
Engaging in sexual relationships
Permanent limitation
Moderate
Cooking/preparing meals
Permanent limitation
Low
Doing housework
Permanent limitation
Low
Performing professional tasks
Permanent limitation
Low
Practicing sports
Permanent limitation
Low
Occasional
Temporality
Severity
Receiving messages in sign language
Permanent limitation
Complete
Receiving messages in sign language
Transient limitation
Severe
Receiving nonverbal messages
Permanent limitation
Low
Receiving nonverbal messages
Transient limitation
Moderate
Using communication devices
Permanent limitation
Severe
Reaching and catching objects
Permanent limitation
Severe
Reaching and catching objects
Transient limitation
Severe
Lifting and carrying objects
Permanent limitation
Severe
Lifting and carrying objects
Transient limitation
Severe
Handling objects (fine hand use)
Permanent limitation
Severe
Handling objects (fine hand use)
Transient limitation
Complete
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Moderate
Driving
Permanent limitation
Severe
Driving
Transient limitation
Moderate
Engaging in and maintaining intimate relationships
Permanent limitation
Severe
Engaging in and maintaining intimate relationships
Transient limitation
Complete
Engaging in sexual relationships
Permanent limitation
Severe
Engaging in sexual relationships
Transient limitation
Complete
Cooking/preparing meals
Permanent limitation
Moderate
Doing housework
Permanent limitation
Moderate
Seeking employment
Permanent limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Socializing
Permanent limitation
Moderate
Practicing sports
Permanent limitation
Moderate
Source: Expert
Last update: 01/09/2021

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