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ORPHA:171  Primary sclerosing cholangitis

:: 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
Carrying out daily routines
Permanent limitation
Low
Occasional
Temporality
Severity
Walking long distances
Permanent limitation
Low
Walking long distances
Transient limitation
Low
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Low
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Low
Falling asleep
Permanent limitation
Moderate
Falling asleep
Transient limitation
Moderate
Staying asleep
Permanent limitation
Moderate
Staying asleep
Transient limitation
Moderate
Getting good quality sleep
Permanent limitation
Moderate
Getting good quality sleep
Transient limitation
Moderate
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Moderate
Handling stress, responsabilities, emergencies and ensuring one's safety
Transient limitation
Moderate
Handling emotions and mood
Permanent limitation
Moderate
Handling emotions and mood
Transient limitation
Moderate
Engaging in paid work in a standard environment
Permanent limitation
Moderate
Engaging in paid work in a standard environment
Transient limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Performing professional tasks
Transient limitation
Moderate
Carrying out daily routines
Transient limitation
Moderate
Travelling
Transient 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
Source: Expert
Last update: 04/07/2019

Additional information

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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.