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ORPHA:71211  Neuromyelitis optica

:: 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
Severe
Walking short distances
Permanent limitation
Severe
Walking long distances
Permanent limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Severe
Frequent
Temporality
Severity
Seeing/watching
Transient limitation
Unspecified
Focusing attention
Transient limitation
Unspecified
Memorizing and retrieving
Transient limitation
Unspecified
Receiving messages in sign language
Transient limitation
Unspecified
Receiving nonverbal messages
Transient limitation
Unspecified
Standing
Permanent limitation
Severe
Standing
Transient limitation
Unspecified
Sitting
Transient limitation
Unspecified
Bending
Transient limitation
Unspecified
Transferring oneself
Permanent limitation
Severe
Transferring oneself
Transient limitation
Unspecified
Maintaining a standing position
Transient limitation
Unspecified
Maintaining head position
Transient limitation
Unspecified
Reaching and catching objects
Transient limitation
Unspecified
Lifting and carrying objects
Transient limitation
Unspecified
Handling objects (fine hand use)
Transient limitation
Unspecified
Walking short distances
Transient limitation
Unspecified
Walking long distances
Transient limitation
Unspecified
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Unspecified
Washing oneself
Transient limitation
Unspecified
Caring for body parts (skin, teeth, nails, hair, genitals)
Transient limitation
Unspecified
Regulating urination
Permanent limitation
Complete
Regulating urination
Transient limitation
Unspecified
Regulating defecation
Permanent limitation
Complete
Regulating defecation
Transient limitation
Unspecified
Dressing/undressing
Transient limitation
Unspecified
Eating
Transient limitation
Unspecified
Drinking
Transient limitation
Unspecified
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Transient limitation
Unspecified
Falling asleep
Transient limitation
Unspecified
Staying asleep
Transient limitation
Unspecified
Getting good quality sleep
Transient limitation
Unspecified
Staying awake
Transient limitation
Unspecified
Moving around within the home
Permanent limitation
Severe
Moving around within the home
Transient limitation
Unspecified
Moving around outside the home
Permanent limitation
Severe
Moving around outside the home
Transient limitation
Unspecified
Using transportation
Permanent limitation
Severe
Using transportation
Transient limitation
Unspecified
Driving
Permanent limitation
Severe
Driving
Transient limitation
Unspecified
Interacting with other people
Transient limitation
Unspecified
Engaging in sexual relationships
Transient limitation
Unspecified
Shopping
Transient limitation
Unspecified
Cooking/preparing meals
Transient limitation
Unspecified
Doing housework
Transient limitation
Unspecified
Looking after/helping others
Transient limitation
Unspecified
Engaging in paid work in a standard environment
Permanent limitation
Unspecified
Engaging in paid work in a supported/sheltered environment
Permanent limitation
Unspecified
Carrying out daily routines
Permanent limitation
Unspecified
Taking part in community life
Transient limitation
Unspecified
Practicing sports
Transient limitation
Unspecified
Travelling
Transient limitation
Unspecified
Occasional
Temporality
Severity
Hearing/listening
Permanent limitation
Unspecified
Focusing attention
Permanent limitation
Unspecified
Memorizing and retrieving
Permanent limitation
Unspecified
Receiving messages in sign language
Permanent limitation
Unspecified
Receiving nonverbal messages
Permanent limitation
Unspecified
Sitting
Permanent limitation
Unspecified
Bending
Permanent limitation
Unspecified
Maintaining a standing position
Permanent limitation
Unspecified
Maintaining head position
Permanent limitation
Unspecified
Reaching and catching objects
Permanent limitation
Unspecified
Lifting and carrying objects
Permanent limitation
Unspecified
Handling objects (fine hand use)
Permanent limitation
Unspecified
Washing oneself
Permanent limitation
Severe
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Severe
Dressing/undressing
Permanent limitation
Severe
Eating
Permanent limitation
Severe
Drinking
Permanent limitation
Severe
Falling asleep
Permanent limitation
Unspecified
Staying asleep
Permanent limitation
Unspecified
Getting good quality sleep
Permanent limitation
Moderate
Staying awake
Permanent limitation
Moderate
Interacting with other people
Permanent limitation
Unspecified
Engaging in sexual relationships
Permanent limitation
Unspecified
Shopping
Permanent limitation
Unspecified
Cooking/preparing meals
Permanent limitation
Unspecified
Doing housework
Permanent limitation
Unspecified
Looking after/helping others
Permanent limitation
Unspecified
Performing professional tasks
Permanent limitation
Unspecified
Handling money/managing one's own budget
Permanent limitation
Unspecified
Carrying out administrative procedures
Permanent limitation
Unspecified
Undertaking a simple task
Permanent limitation
Unspecified
Undertaking a complex/multiple task
Permanent limitation
Unspecified
Taking part in community life
Permanent limitation
Unspecified
Practicing sports
Permanent limitation
Unspecified
Travelling
Permanent limitation
Unspecified
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.

Temperature
Humidity
Source: Dr Romain MARIGNIER[Expert]_The Transverse Myelitis Association[Patient organisation]_Dr Benjamin GREENBERG[Expert]
Last update: 27/03/2015

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