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ORPHA:63  Alport 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
Seeing/watching
Permanent limitation
Low
Hearing/listening
Permanent limitation
Severe
Receiving spoken messages
Permanent limitation
Low
Participating in a conversation
Permanent limitation
Low
Walking long distances
Transient limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Moderate
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Moderate
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Transient limitation
Severe
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Low
Accessing higher education
Transient limitation
Severe
Engaging in paid work in a standard environment
Permanent limitation
Low
Seeking employment
Permanent limitation
Low
Carrying out daily routines
Transient limitation
Low
Practicing sports
Transient limitation
Moderate
Travelling
Permanent limitation
Low
Occasional
Temporality
Severity
Seeing/watching
Permanent limitation
Severe
Controlling one's own eating behaviour
Transient limitation
Moderate
Interacting with other people
Permanent limitation
Moderate
Attending mainstream school
Transient limitation
Moderate
Performing professional tasks
Transient limitation
Severe
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
Light quality
Sound intensity
Sound quality
Source: Dr Laurence HEIDET[Expert]
Last update: 24/05/2016

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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.