Orphanet: Disability
x

Search for a disease and its functional consequences

* (*) mandatory field

ORPHA:225154  Familial infantile bilateral striatal necrosis

:: 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
Learning
Permanent limitation
Complete
Applying knowledge
Permanent limitation
Complete
Cognitive abilities
Permanent limitation
Complete
Receiving spoken messages
Permanent limitation
Complete
Receiving nonverbal messages
Permanent limitation
Severe
Receiving written messages
Permanent limitation
Complete
Speaking
Permanent limitation
Complete
Producing nonverbal messages
Permanent limitation
Severe
Writing messages
Permanent limitation
Complete
Participating in a conversation
Permanent limitation
Complete
Using communication devices
Permanent limitation
Complete
Standing
Permanent limitation
Complete
Sitting
Permanent limitation
Complete
Bending
Permanent limitation
Complete
Transferring oneself
Permanent limitation
Severe
Maintaining a standing position
Permanent limitation
Complete
Maintaining head position
Permanent limitation
Severe
Using objects
Permanent limitation
Complete
Walking
Permanent limitation
Complete
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Complete
Washing oneself
Permanent limitation
Complete
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Complete
Regulating urination
Permanent limitation
Complete
Regulating defecation
Permanent limitation
Complete
Dressing/undressing
Permanent limitation
Complete
Eating
Permanent limitation
Complete
Drinking
Permanent limitation
Complete
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Complete
Falling asleep
Permanent limitation
Severe
Staying asleep
Permanent limitation
Severe
Getting good quality sleep
Permanent limitation
Severe
Moving around within the home
Permanent limitation
Complete
Moving around outside the home
Permanent limitation
Complete
Moving around using transportation
Permanent limitation
Complete
Interacting with other people
Permanent limitation
Severe
Making/keeping friends
Permanent limitation
Complete
Dealing with strangers
Permanent limitation
Severe
Engaging in and maintaining intimate relationships
Permanent limitation
Complete
Engaging in sexual relationships
Permanent limitation
Complete
Household
Permanent limitation
Complete
Attending preschool
Permanent limitation
Severe
Attending mainstream school
Permanent limitation
Complete
Attending school in an adapted mainstream/special environment
Permanent limitation
Complete
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Complete
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Complete
Work and economic life
Permanent limitation
Complete
Life management
Permanent limitation
Complete
Taking part in community life
Permanent limitation
Complete
Playing with others
Permanent limitation
Complete
Socializing
Permanent limitation
Complete
Practicing sports
Permanent limitation
Complete
Participating in the arts and cultural activities
Permanent limitation
Complete
Travelling
Permanent limitation
Complete
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
Source: Dr Rachel STRAUSSBERG[Expert]
Last update: 26/01/2017

Additional information

Specialised Social Services

Warning

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.