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ORPHA:101016  Romano-Ward syndrome

:: 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
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Moderate
Playing with others
Permanent limitation
Unspecified
Practicing sports
Permanent limitation
Moderate
Frequent
Temporality
Severity
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Transient limitation
Low
Falling asleep
Permanent limitation
Unspecified
Staying asleep
Permanent limitation
Unspecified
Getting good quality sleep
Permanent limitation
Unspecified
Handling stress, responsabilities, emergencies and ensuring one's safety
Permanent limitation
Severe
Taking part in community life
Permanent limitation
Unspecified
Socializing
Permanent limitation
Unspecified
Occasional
Temporality
Severity
Focusing attention
Permanent limitation
Unspecified
Driving
Permanent limitation
Unspecified
Making/keeping friends
Acquisition delay
Unspecified
Maintaining family relationships
Permanent limitation
Unspecified
Maintaining family relationships
Acquisition delay
Unspecified
Engaging in and maintaining intimate relationships
Transient limitation
Unspecified
Engaging in sexual relationships
Transient limitation
Unspecified
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Moderate
Engaging in paid work in a standard environment
Permanent limitation
Moderate
Seeking employment
Permanent limitation
Low
Travelling
Permanent limitation
Moderate
Not defined
Handling emotions and mood
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
Humidity
Light intensity
Sound intensity
Sound quality
Vibrations
Source: Dr Federica DAGRADI[Expert]_Association Française des Maladies Héréditaires du Trouble du Rythme Cardiaque[Patient organisation]
Last update: 27/11/2014

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.