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ORPHA:2578  Mayer-Rokitansky-Küster-Hauser syndrome type 2

:: 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
Performing vigorous activities (climbing, running, jumping, swimming,...)
Transient limitation
Low
Engaging in and maintaining intimate relationships
Acquisition delay
Moderate
Engaging in sexual relationships
Acquisition delay
Severe
Occasional
Temporality
Severity
Sitting
Acquisition delay
Low
Maintaining a standing position
Transient limitation
Low
Maintaining head position
Transient limitation
Low
Lifting and carrying objects
Transient limitation
Low
Walking long distances
Transient limitation
Low
Interacting with other people
Acquisition delay
Moderate
Making/keeping friends
Acquisition delay
Moderate
Maintaining family relationships
Acquisition delay
Moderate
Taking part in community life
Acquisition delay
Moderate
Playing with others
Acquisition delay
Moderate
Socializing
Acquisition delay
Moderate
Source: Association Syndrome de Rokitansky-MRKH[Patient organisation]_Dr Karine MORCEL[Expert]_Dr Daniel GUERRIER[Expert]
Last update: 01/07/2019

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