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ORPHA:732 Polymyositis

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.

Environmental factors may however require particular attention for an optimal management of this disease. This information is restricted to the consequences of the disease and its management on functioning and daily life. Clinical aspects (including fatigue, pain, impact of the disease on the patient’s psychological state) are described through other documents (i.e. Disability factsheets).

Loss of an ability
Very frequent

Temporality
Severity
Doing housework
Transient limitation
Moderate
Driving
Transient limitation
Moderate
Moving around outside the home
Transient limitation
Moderate
Shopping
Transient limitation
Moderate
Using transportation
Transient limitation
Moderate
Frequent

Temporality
Severity
Accessing higher education
Transient limitation
Complete
Bending
Transient limitation
Severe
Controlling one's own eating behaviour
Transient limitation
Moderate
Cooking/preparing meals
Transient limitation
Moderate
Engaging in and maintaining intimate relationships
Transient limitation
Moderate
Engaging in paid work in a standard environment
Transient limitation
Complete
Engaging in paid work in a supported/sheltered environment
Transient limitation
Complete
Learning a profession (vocational training/apprenticeship) in an adapted mainstream/special environment
Transient limitation
Complete
Learning a profession (vocational training/apprenticeship) in the standard environment
Transient limitation
Complete
Lifting and carrying objects
Transient limitation
Moderate
Looking after/helping others
Transient limitation
Moderate
Performing professional tasks
Transient limitation
Complete
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Complete
Practicing sports
Transient limitation
Complete
Seeking employment
Transient limitation
Complete
Sitting
Transient limitation
Moderate
Socializing
Transient limitation
Moderate
Standing
Transient limitation
Moderate
Taking part in community life
Transient limitation
Moderate
Travelling
Transient limitation
Severe
Walking long distances
Transient limitation
Low
Walking short distances
Transient limitation
Moderate
Occasional

Temporality
Severity
Bending
Transient limitation
Complete
Caring for body parts (skin, teeth, nails, hair, genitals)
Transient limitation
Moderate
Doing housework
Permanent limitation
Moderate
Doing housework
Transient limitation
Complete
Dressing/undressing
Transient limitation
Moderate
Drinking
Transient limitation
Severe
Driving
Transient limitation
Complete
Eating
Transient limitation
Severe
Engaging in paid work in a standard environment
Permanent limitation
Moderate
Engaging in paid work in a supported/sheltered environment
Permanent limitation
Moderate
Engaging in sexual relationships
Transient limitation
Moderate
Falling asleep
Transient limitation
Severe
Handling emotions and mood
Transient limitation
Moderate
Lifting and carrying objects
Permanent limitation
Moderate
Lifting and carrying objects
Transient limitation
Complete
Looking after/helping others
Transient limitation
Severe
Maintaining a standing position
Transient limitation
Severe
Maintaining head position
Transient limitation
Low
Moving around outside the home
Transient limitation
Severe
Moving around within the home
Transient limitation
Severe
Participating in the arts and cultural activities
Transient limitation
Moderate
Performing professional tasks
Permanent limitation
Moderate
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Complete
Playing with others
Transient limitation
Moderate
Practicing sports
Permanent limitation
Complete
Reaching and catching objects
Transient limitation
Low
Seeking employment
Permanent limitation
Moderate
Shopping
Permanent limitation
Moderate
Shopping
Transient limitation
Complete
Sitting
Transient limitation
Complete
Standing
Transient limitation
Complete
Taking part in community life
Transient limitation
Severe
Transferring oneself
Transient limitation
Severe
Travelling
Permanent limitation
Severe
Travelling
Transient limitation
Complete
Using transportation
Transient limitation
Severe
Walking long distances
Permanent limitation
Moderate
Walking long distances
Transient limitation
Complete
Walking short distances
Transient limitation
Complete
Washing oneself
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.

Food
Source: Dr Yves ALLENBACH[Expert]
Last update: 27/03/2015

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