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ORPHA:626  Large congenital melanocytic nevus

:: 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
Frequent
Temporality
Severity
Socializing
Permanent limitation
Low
Socializing
Acquisition delay
Low
Socializing
Transient limitation
Low
Occasional
Temporality
Severity
Acquiring language
Permanent limitation
Moderate
Acquiring language
Acquisition delay
Moderate
Learning to read
Permanent limitation
Moderate
Learning to read
Acquisition delay
Moderate
Learning to write
Permanent limitation
Moderate
Learning to write
Acquisition delay
Moderate
Learning to calculate
Permanent limitation
Moderate
Learning to calculate
Acquisition delay
Moderate
Reading
Permanent limitation
Moderate
Reading
Acquisition delay
Moderate
Writing
Permanent limitation
Moderate
Writing
Acquisition delay
Moderate
Calculating
Permanent limitation
Moderate
Calculating
Acquisition delay
Moderate
Memorizing and retrieving
Permanent limitation
Moderate
Thinking and reasoning
Permanent limitation
Moderate
Making decisions/taking initiatives/finding solutions
Permanent limitation
Moderate
Receiving nonverbal messages
Permanent limitation
Moderate
Receiving written messages
Permanent limitation
Moderate
Producing nonverbal messages
Permanent limitation
Moderate
Washing oneself
Permanent limitation
Low
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Moderate
Dressing/undressing
Permanent limitation
Low
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Low
Staying asleep
Transient limitation
Low
Getting good quality sleep
Transient limitation
Low
Handling stress, responsabilities, emergencies and ensuring one's safety
Transient limitation
Low
Handling emotions and mood
Transient limitation
Low
Controlling one's own general behaviour
Transient limitation
Low
Making/keeping friends
Acquisition delay
Low
Making/keeping friends
Transient limitation
Low
Dealing with strangers
Acquisition delay
Low
Dealing with strangers
Transient limitation
Low
Engaging in and maintaining intimate relationships
Transient limitation
Low
Looking after/helping others
Permanent limitation
Moderate
Attending preschool
Permanent limitation
Moderate
Attending preschool
Acquisition delay
Moderate
Attending preschool
Transient limitation
Low
Learning a profession (vocational training/apprenticeship) in the standard environment
Permanent limitation
Moderate
Accessing higher education
Permanent limitation
Moderate
Accessing higher education
Acquisition delay
Low
Accessing higher education
Transient limitation
Low
Engaging in paid work in a standard environment
Transient limitation
Moderate
Seeking employment
Transient limitation
Moderate
Handling money/managing one's own budget
Permanent limitation
Moderate
Carrying out administrative procedures
Permanent limitation
Moderate
Undertaking a complex/multiple task
Permanent limitation
Moderate
Taking part in community life
Permanent limitation
Moderate
Taking part in community life
Acquisition delay
Moderate
Taking part in community life
Transient limitation
Moderate
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.

Light quality
Source: Expert
Last update: 01/07/2019

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