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ORPHA:2573 Moyamoya 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.

Environmental factors may however require particular attention for an optimal management of this disease. This information is restricted to the consequences of the disease and its management on functioning and daily life. Clinical aspects (including fatigue, pain, impact of the disease on the patient’s psychological state) are described through other documents (i.e. Disability factsheets).

Loss of an ability
Very frequent

Temporality
Severity
Attending mainstream school
Permanent limitation
Severe
Focusing attention
Permanent limitation
Severe
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Severe
Making decisions/taking initiatives/finding solutions
Permanent limitation
Severe
Memorizing and retrieving
Permanent limitation
Severe
Practicing sports
Permanent limitation
Severe
Receiving messages in sign language
Permanent limitation
Severe
Receiving written messages
Acquisition delay
Severe
Speaking
Acquisition delay
Severe
Travelling
Permanent limitation
Severe
Undertaking a complex/multiple task
Permanent limitation
Complete
Frequent

Temporality
Severity
Accessing higher education
Permanent limitation
Complete
Acquiring language
Permanent limitation
Moderate
Acquiring language
Acquisition delay
Moderate
Being aware of space
Acquisition delay
Moderate
Being aware of time
Permanent limitation
Moderate
Being aware of time
Acquisition delay
Moderate
Bending
Permanent limitation
Severe
Calculating
Permanent limitation
Severe
Calculating
Acquisition delay
Severe
Caring for body parts (skin, teeth, nails, hair, genitals)
Acquisition delay
Moderate
Caring for body parts (skin, teeth, nails, hair, genitals)
Transient limitation
Moderate
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Moderate
Carrying out administrative procedures
Permanent limitation
Severe
Carrying out daily routines
Permanent limitation
Moderate
Controlling one's own general behaviour
Permanent limitation
Moderate
Cooking/preparing meals
Permanent limitation
Moderate
Dealing with strangers
Permanent limitation
Severe
Doing housework
Permanent limitation
Moderate
Dressing/undressing
Acquisition delay
Moderate
Dressing/undressing
Transient limitation
Moderate
Dressing/undressing
Permanent limitation
Moderate
Drinking
Transient limitation
Moderate
Drinking
Permanent limitation
Moderate
Driving
Permanent limitation
Severe
Eating
Acquisition delay
Moderate
Eating
Transient limitation
Moderate
Eating
Permanent limitation
Moderate
Falling asleep
Permanent limitation
Moderate
Getting good quality sleep
Permanent limitation
Moderate
Handling emotions and mood
Permanent limitation
Moderate
Handling money/managing one's own budget
Permanent limitation
Severe
Handling objects (fine hand use)
Acquisition delay
Severe
Handling objects (fine hand use)
Permanent limitation
Severe
Interacting with other people
Permanent limitation
Severe
Learning to calculate
Acquisition delay
Severe
Learning to read
Acquisition delay
Severe
Learning to write
Acquisition delay
Severe
Lifting and carrying objects
Permanent limitation
Severe
Maintaining a standing position
Permanent limitation
Severe
Maintaining head position
Permanent limitation
Severe
Making/keeping friends
Permanent limitation
Severe
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Transient limitation
Moderate
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Moderate
Moving around outside the home
Permanent limitation
Severe
Participating in a conversation
Permanent limitation
Severe
Participating in the arts and cultural activities
Permanent limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Acquisition delay
Severe
Playing with others
Permanent limitation
Moderate
Reaching and catching objects
Permanent limitation
Severe
Reading
Permanent limitation
Severe
Reading
Acquisition delay
Severe
Receiving nonverbal messages
Permanent limitation
Severe
Receiving spoken messages
Acquisition delay
Severe
Receiving spoken messages
Permanent limitation
Severe
Shopping
Permanent limitation
Moderate
Sitting
Permanent limitation
Severe
Socializing
Permanent limitation
Low
Standing
Permanent limitation
Severe
Staying asleep
Permanent limitation
Moderate
Staying awake
Permanent limitation
Moderate
Taking part in community life
Permanent limitation
Moderate
Thinking and reasoning
Permanent limitation
Moderate
Transferring oneself
Permanent limitation
Severe
Undertaking a simple task
Permanent limitation
Moderate
Using communication devices
Permanent limitation
Severe
Using transportation
Permanent limitation
Moderate
Walking long distances
Acquisition delay
Severe
Walking long distances
Permanent limitation
Severe
Walking short distances
Acquisition delay
Severe
Washing oneself
Acquisition delay
Moderate
Washing oneself
Transient limitation
Moderate
Washing oneself
Permanent limitation
Moderate
Writing
Permanent limitation
Severe
Writing
Acquisition delay
Severe
Writing messages
Acquisition delay
Severe
Writing messages
Permanent limitation
Severe
Occasional

Temporality
Severity
Accessing higher education
Transient limitation
Complete
Acquiring language
Transient limitation
Severe
Attending mainstream school
Transient limitation
Severe
Attending preschool
Permanent limitation
Severe
Being aware of space
Permanent limitation
Moderate
Bending
Transient limitation
Severe
Carrying out administrative procedures
Transient limitation
Complete
Carrying out daily routines
Transient limitation
Complete
Controlling one's own eating behaviour
Permanent limitation
Moderate
Cooking/preparing meals
Transient limitation
Severe
Dealing with strangers
Transient limitation
Severe
Doing housework
Transient limitation
Severe
Driving
Transient limitation
Complete
Engaging in and maintaining intimate relationships
Permanent limitation
Moderate
Engaging in and maintaining intimate relationships
Transient limitation
Severe
Engaging in paid work in a standard environment
Transient limitation
Complete
Engaging in paid work in a standard environment
Permanent limitation
Complete
Engaging in paid work in a supported/sheltered environment
Permanent limitation
Severe
Engaging in paid work in a supported/sheltered environment
Transient limitation
Complete
Engaging in sexual relationships
Permanent limitation
Moderate
Engaging in sexual relationships
Transient limitation
Severe
Handling money/managing one's own budget
Transient limitation
Complete
Handling objects (fine hand use)
Transient limitation
Severe
Hearing/listening
Permanent limitation
Moderate
Interacting with other people
Transient limitation
Severe
Learning a profession (vocational training/apprenticeship) in the standard environment
Transient limitation
Complete
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Complete
Learning to calculate
Permanent limitation
Severe
Learning to read
Permanent limitation
Severe
Learning to write
Permanent limitation
Severe
Lifting and carrying objects
Transient limitation
Severe
Looking after/helping others
Permanent limitation
Moderate
Looking after/helping others
Transient limitation
Severe
Maintaining a standing position
Acquisition delay
Severe
Maintaining a standing position
Transient limitation
Severe
Maintaining head position
Transient limitation
Severe
Making/keeping friends
Transient limitation
Severe
Moving around outside the home
Transient limitation
Severe
Moving around within the home
Permanent limitation
Severe
Moving around within the home
Transient limitation
Severe
Participating in the arts and cultural activities
Transient limitation
Severe
Performing professional tasks
Transient limitation
Complete
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Severe
Playing with others
Transient limitation
Severe
Practicing sports
Transient limitation
Severe
Producing messages in sign language
Transient limitation
Severe
Producing messages in sign language
Permanent limitation
Severe
Producing nonverbal messages
Acquisition delay
Severe
Producing nonverbal messages
Permanent limitation
Severe
Reaching and catching objects
Acquisition delay
Severe
Reaching and catching objects
Transient limitation
Severe
Receiving messages in sign language
Transient limitation
Severe
Receiving nonverbal messages
Transient limitation
Severe
Receiving spoken messages
Transient limitation
Severe
Receiving written messages
Transient limitation
Severe
Receiving written messages
Permanent limitation
Severe
Regulating defecation
Permanent limitation
Moderate
Regulating urination
Permanent limitation
Moderate
Seeing/watching
Acquisition delay
Low
Seeing/watching
Transient limitation
Severe
Seeing/watching
Permanent limitation
Severe
Seeking employment
Transient limitation
Complete
Seeking employment
Permanent limitation
Severe
Shopping
Transient limitation
Severe
Sitting
Acquisition delay
Severe
Sitting
Transient limitation
Severe
Socializing
Transient limitation
Severe
Speaking
Transient limitation
Severe
Speaking
Permanent limitation
Severe
Standing
Acquisition delay
Severe
Standing
Transient limitation
Severe
Taking part in community life
Permanent limitation
Severe
Transferring oneself
Transient limitation
Severe
Travelling
Transient limitation
Complete
Undertaking a complex/multiple task
Transient limitation
Complete
Undertaking a simple task
Transient limitation
Complete
Using transportation
Transient limitation
Severe
Walking long distances
Transient limitation
Severe
Walking short distances
Transient limitation
Severe
Walking short distances
Permanent limitation
Severe
Writing messages
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
Humidity
Light intensity
Light quality
Day/night cycles
Sound intensity
Source: Dr Dominique HERVE[Expert]_Association Tanguy Moya-Moya[Patient organisation]
Last update: 22/08/2018

Warning

The documents contained in thisweb 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.