x

Search for a disease and its functional consequences

* (*) mandatory field

ORPHA:848  Beta-thalassemia

:: 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
Standing
Transient limitation
Severe
Maintaining a standing position
Transient limitation
Severe
Handling objects (fine hand use)
Transient limitation
Moderate
Walking short distances
Transient limitation
Severe
Walking long distances
Transient limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Severe
Engaging in paid work in a standard environment
Transient limitation
Severe
Engaging in paid work in a supported/sheltered environment
Transient limitation
Moderate
Frequent
Temporality
Severity
Acquiring language
Permanent limitation
Moderate
Acquiring language
Transient limitation
Moderate
Learning to read
Permanent limitation
Moderate
Learning to read
Transient limitation
Moderate
Learning to calculate
Permanent limitation
Moderate
Learning to calculate
Transient limitation
Moderate
Focusing attention
Permanent limitation
Moderate
Focusing attention
Transient limitation
Moderate
Memorizing and retrieving
Permanent limitation
Moderate
Memorizing and retrieving
Transient limitation
Moderate
Thinking and reasoning
Permanent limitation
Moderate
Thinking and reasoning
Transient limitation
Moderate
Making decisions/taking initiatives/finding solutions
Permanent limitation
Moderate
Making decisions/taking initiatives/finding solutions
Transient limitation
Moderate
Receiving spoken messages
Transient limitation
Low
Maintaining a standing position
Permanent limitation
Moderate
Walking long distances
Permanent limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Moderate
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Severe
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Transient limitation
Severe
Staying awake
Permanent limitation
Moderate
Staying awake
Transient limitation
Moderate
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Severe
Handling stress, responsabilities, emergencies and ensuring one's safety
Transient limitation
Moderate
Handling emotions and mood
Permanent limitation
Severe
Handling emotions and mood
Transient limitation
Moderate
Controlling one's own general behaviour
Permanent limitation
Severe
Controlling one's own general behaviour
Transient limitation
Moderate
Controlling one's own eating behaviour
Permanent limitation
Severe
Controlling one's own eating behaviour
Transient limitation
Moderate
Moving around outside the home
Permanent limitation
Low
Moving around outside the home
Transient limitation
Severe
Driving
Transient limitation
Moderate
Making/keeping friends
Acquisition delay
Moderate
Making/keeping friends
Transient limitation
Moderate
Maintaining family relationships
Transient limitation
Moderate
Engaging in and maintaining intimate relationships
Acquisition delay
Moderate
Engaging in and maintaining intimate relationships
Transient limitation
Moderate
Engaging in sexual relationships
Transient limitation
Moderate
Shopping
Permanent limitation
Moderate
Shopping
Transient limitation
Moderate
Cooking/preparing meals
Permanent limitation
Moderate
Cooking/preparing meals
Transient limitation
Moderate
Doing housework
Permanent limitation
Moderate
Doing housework
Transient limitation
Moderate
Looking after/helping others
Permanent limitation
Moderate
Looking after/helping others
Transient limitation
Severe
Attending mainstream school
Permanent limitation
Moderate
Attending mainstream school
Acquisition delay
Moderate
Attending mainstream school
Transient limitation
Moderate
Attending school in an adapted mainstream/special environment
Permanent limitation
Moderate
Attending school in an adapted mainstream/special environment
Transient limitation
Moderate
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Moderate
Learning a profession (vocational training/apprenticeship) in the standard environment
Transient limitation
Moderate
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Permanent limitation
Moderate
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Transient limitation
Moderate
Accessing higher education
Permanent limitation
Moderate
Accessing higher education
Acquisition delay
Severe
Accessing higher education
Transient limitation
Severe
Engaging in paid work in a standard environment
Permanent limitation
Severe
Engaging in paid work in a standard environment
Acquisition delay
Severe
Seeking employment
Permanent limitation
Severe
Seeking employment
Acquisition delay
Severe
Seeking employment
Transient limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Performing professional tasks
Transient limitation
Moderate
Taking part in community life
Transient limitation
Moderate
Socializing
Transient limitation
Moderate
Practicing sports
Permanent limitation
Low
Practicing sports
Acquisition delay
Unspecified
Practicing sports
Transient limitation
Low
Travelling
Permanent limitation
Severe
Travelling
Transient limitation
Severe
Occasional
Temporality
Severity
Acquiring language
Acquisition delay
Low
Learning to read
Acquisition delay
Low
Learning to calculate
Acquisition delay
Low
Focusing attention
Acquisition delay
Low
Memorizing and retrieving
Acquisition delay
Low
Thinking and reasoning
Acquisition delay
Low
Making decisions/taking initiatives/finding solutions
Acquisition delay
Low
Speaking
Transient limitation
Low
Writing messages
Transient limitation
Low
Participating in a conversation
Transient limitation
Moderate
Standing
Permanent limitation
Severe
Walking short distances
Permanent limitation
Moderate
Moving around within the home
Permanent limitation
Low
Moving around within the home
Transient limitation
Moderate
Attending school in an adapted mainstream/special environment
Acquisition delay
Moderate
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Acquisition delay
Moderate
Handling money/managing one's own budget
Acquisition delay
Low
Carrying out administrative procedures
Acquisition delay
Low
Undertaking a simple task
Acquisition delay
Moderate
Undertaking a complex/multiple task
Acquisition delay
Moderate
Carrying out daily routines
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
Transient limitation
Low
Socializing
Permanent limitation
Low
Socializing
Acquisition delay
Moderate
Participating in the arts and cultural activities
Transient limitation
Unspecified
Source: [Expert]_FMDT SOS Globi_[Patient organisation]_Association Française de Lutte contre les Thalassémies[Patient organisation]
Last update: 01/01/2019

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.