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ORPHA:827  Stargardt disease

:: 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
Unspecified
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Low
Frequent
Temporality
Severity
Seeing/watching
Transient limitation
Moderate
Being aware of space
Permanent limitation
Low
Using communication devices
Permanent limitation
Low
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Low
Driving
Permanent limitation
Complete
Driving
Permanent limitation
Severe
Cooking/preparing meals
Permanent limitation
Low
Occasional
Temporality
Severity
Receiving written messages
Permanent limitation
Low
Receiving written messages
Acquisition delay
Moderate
Writing messages
Permanent limitation
Low
Writing messages
Acquisition delay
Moderate
Using communication devices
Acquisition delay
Moderate
Dressing/undressing
Permanent limitation
Low
Dressing/undressing
Acquisition delay
Moderate
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Low
Handling stress, responsabilities, emergencies and ensuring one's safety
Acquisition delay
Moderate
Handling emotions and mood
Permanent limitation
Low
Handling emotions and mood
Acquisition delay
Moderate
Controlling one's own general behaviour
Permanent limitation
Low
Controlling one's own general behaviour
Acquisition delay
Moderate
Moving around outside the home
Permanent limitation
Low
Moving around outside the home
Acquisition delay
Moderate
Using transportation
Permanent limitation
Low
Using transportation
Acquisition delay
Moderate
Shopping
Permanent limitation
Low
Shopping
Acquisition delay
Moderate
Cooking/preparing meals
Acquisition delay
Moderate
Doing housework
Permanent limitation
Low
Doing housework
Acquisition delay
Moderate
Attending mainstream school
Permanent limitation
Low
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Low
Accessing higher education
Permanent limitation
Low
Engaging in paid work in a standard environment
Permanent limitation
Low
Engaging in paid work in a standard environment
Acquisition delay
Moderate
Seeking employment
Permanent limitation
Low
Seeking employment
Acquisition delay
Moderate
Performing professional tasks
Permanent limitation
Low
Performing professional tasks
Acquisition delay
Moderate
Carrying out administrative procedures
Permanent limitation
Low
Carrying out administrative procedures
Acquisition delay
Moderate
Taking part in community life
Permanent limitation
Low
Taking part in community life
Acquisition delay
Moderate
Playing with others
Permanent limitation
Low
Playing with others
Acquisition delay
Moderate
Socializing
Permanent limitation
Low
Socializing
Acquisition delay
Moderate
Practicing sports
Permanent limitation
Low
Practicing sports
Acquisition delay
Moderate
Participating in the arts and cultural activities
Permanent limitation
Low
Participating in the arts and cultural activities
Acquisition delay
Moderate
Travelling
Permanent limitation
Low
Travelling
Acquisition delay
Moderate
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.

Light intensity
Light quality
Day/night cycles
Source: Dr Mark WILKINSON{Expert]_APNES[Patient organization]
Last update: 13/07/2016

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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.