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ORPHA:892  Von Hippel-Lindau 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
Frequent
Temporality
Severity
Seeing/watching
Permanent limitation
Moderate
Standing
Transient limitation
Unspecified
Sitting
Transient limitation
Unspecified
Bending
Transient limitation
Unspecified
Maintaining a standing position
Transient limitation
Unspecified
Reaching and catching objects
Transient limitation
Unspecified
Walking short distances
Transient limitation
Severe
Walking long distances
Transient limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Severe
Regulating defecation
Transient limitation
Severe
Handling stress, responsabilities, emergencies and ensuring one's safety
Transient limitation
Severe
Handling emotions and mood
Transient limitation
Moderate
Moving around within the home
Transient limitation
Severe
Moving around outside the home
Transient limitation
Severe
Cooking/preparing meals
Transient limitation
Severe
Doing housework
Transient limitation
Severe
Looking after/helping others
Transient limitation
Severe
Learning a profession (vocational training/apprenticeship) in the standard environment
Transient limitation
Severe
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Transient limitation
Severe
Accessing higher education
Transient limitation
Severe
Engaging in paid work in a standard environment
Transient limitation
Severe
Seeking employment
Transient limitation
Severe
Performing professional tasks
Transient limitation
Severe
Taking part in community life
Transient limitation
Severe
Playing with others
Transient limitation
Severe
Socializing
Transient limitation
Severe
Practicing sports
Transient limitation
Severe
Participating in the arts and cultural activities
Transient limitation
Severe
Travelling
Transient limitation
Severe
Occasional
Temporality
Severity
Seeing/watching
Permanent limitation
Complete
Seeing/watching
Permanent limitation
Severe
Hearing/listening
Permanent limitation
Severe
Hearing/listening
Permanent limitation
Moderate
Learning
Permanent limitation
Unspecified
Reading
Permanent limitation
Unspecified
Writing
Permanent limitation
Unspecified
Writing
Transient limitation
Unspecified
Focusing attention
Permanent limitation
Unspecified
Receiving spoken messages
Permanent limitation
Unspecified
Receiving written messages
Permanent limitation
Unspecified
Speaking
Permanent limitation
Unspecified
Writing messages
Permanent limitation
Unspecified
Writing messages
Transient limitation
Unspecified
Participating in a conversation
Permanent limitation
Unspecified
Using communication devices
Permanent limitation
Unspecified
Standing
Permanent limitation
Unspecified
Sitting
Permanent limitation
Unspecified
Bending
Permanent limitation
Unspecified
Transferring oneself
Permanent limitation
Unspecified
Maintaining a standing position
Permanent limitation
Unspecified
Maintaining head position
Permanent limitation
Unspecified
Maintaining head position
Transient limitation
Unspecified
Reaching and catching objects
Permanent limitation
Unspecified
Lifting and carrying objects
Permanent limitation
Unspecified
Lifting and carrying objects
Transient limitation
Unspecified
Handling objects (fine hand use)
Permanent limitation
Unspecified
Handling objects (fine hand use)
Transient limitation
Severe
Walking short distances
Permanent limitation
Severe
Walking long distances
Permanent limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Severe
Washing oneself
Permanent limitation
Unspecified
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Unspecified
Regulating urination
Permanent limitation
Unspecified
Regulating urination
Transient limitation
Unspecified
Regulating defecation
Permanent limitation
Unspecified
Dressing/undressing
Permanent limitation
Unspecified
Dressing/undressing
Transient limitation
Severe
Eating
Permanent limitation
Unspecified
Eating
Transient limitation
Unspecified
Drinking
Permanent limitation
Unspecified
Drinking
Transient limitation
Unspecified
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Unspecified
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Transient limitation
Unspecified
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Unspecified
Handling emotions and mood
Transient limitation
Severe
Controlling one's own general behaviour
Permanent limitation
Unspecified
Controlling one's own general behaviour
Transient limitation
Severe
Moving around within the home
Permanent limitation
Severe
Moving around outside the home
Permanent limitation
Severe
Using transportation
Permanent limitation
Severe
Driving
Permanent limitation
Severe
Interacting with other people
Permanent limitation
Unspecified
Interacting with other people
Transient limitation
Unspecified
Making/keeping friends
Permanent limitation
Unspecified
Making/keeping friends
Transient limitation
Severe
Maintaining family relationships
Permanent limitation
Unspecified
Maintaining family relationships
Transient limitation
Severe
Engaging in and maintaining intimate relationships
Permanent limitation
Unspecified
Engaging in and maintaining intimate relationships
Transient limitation
Unspecified
Engaging in sexual relationships
Permanent limitation
Moderate
Shopping
Permanent limitation
Severe
Shopping
Transient limitation
Severe
Cooking/preparing meals
Permanent limitation
Unspecified
Doing housework
Permanent limitation
Unspecified
Looking after/helping others
Permanent limitation
Severe
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Unspecified
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Unspecified
Accessing higher education
Permanent limitation
Unspecified
Engaging in paid work in a standard environment
Permanent limitation
Severe
Seeking employment
Permanent limitation
Moderate
Performing professional tasks
Permanent limitation
Unspecified
Undertaking a simple task
Permanent limitation
Unspecified
Undertaking a complex/multiple task
Permanent limitation
Unspecified
Carrying out daily routines
Permanent limitation
Unspecified
Taking part in community life
Permanent limitation
Unspecified
Playing with others
Permanent limitation
Unspecified
Socializing
Permanent limitation
Unspecified
Practicing sports
Permanent limitation
Moderate
Participating in the arts and cultural activities
Permanent limitation
Unspecified
Travelling
Permanent limitation
Moderate
Not defined
Memorizing and retrieving
Thinking and reasoning
Being aware of time
Being aware of space
Falling asleep
Staying asleep
Getting good quality sleep
Staying awake
Controlling one's own eating behaviour
Handling money/managing one's own budget
Carrying out administrative procedures
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
Sound intensity
Sound quality
Source: Pr Stéphane RICHARD[Expert]_Pr Eamonn MAHER[Expert]_VHL Family Alliance[Patient organisation]
Last update: 28/11/2014

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