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ORPHA:447  Paroxysmal nocturnal hemoglobinuria

:: 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,...)
Transient limitation
Moderate
Frequent
Temporality
Severity
Walking short distances
Transient limitation
Low
Walking long distances
Transient limitation
Low
Shopping
Transient limitation
Low
Cooking/preparing meals
Transient limitation
Low
Practicing sports
Transient limitation
Moderate
Travelling
Transient limitation
Low
Occasional
Temporality
Severity
Focusing attention
Transient limitation
Low
Memorizing and retrieving
Transient limitation
Low
Thinking and reasoning
Transient limitation
Low
Staying asleep
Transient limitation
Low
Getting good quality sleep
Transient limitation
Low
Staying awake
Transient limitation
Low
Making/keeping friends
Transient limitation
Low
Engaging in and maintaining intimate relationships
Transient limitation
Unspecified
Engaging in sexual relationships
Transient limitation
Unspecified
Shopping
Transient limitation
Moderate
Doing housework
Transient limitation
Low
Engaging in paid work in a standard environment
Transient limitation
Low
Performing professional tasks
Transient limitation
Low
Carrying out daily routines
Transient limitation
Low
Taking part in community life
Transient limitation
Low
Socializing
Transient limitation
Low
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: Expert
Last update: 03/12/2018

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.