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- Title
Hidrocefalia cu stenoză apeductală nontumorală asociată unei forme de neurofibromatoză și importanța educației pacientului și a familiei acestuia.
- Authors
Elkan, Eva-Maria; Ana, Croitoru; Goroftei, Roxana Elena Bogdan; Sevastian, Emanuiela; Mihaela, Lungu; Mitincu-Caramfil, Simona Dana; Zlati, Monica Laura; Ciortea, Diana; Banu, Elena Ariela; Stan, Beatris Cela; Salvanu, Aurora Carmen; Papuc, Ana-Maria; Alexandru, Nechifor; Violeta, Șapira
- Abstract
The spectrum of neurofibromatosis comprises a variety of symptoms with evolution form childhood until adulthood. Even if the neurofibromatosis is diagnosed at early ages in pur land and is attentively under the specialists surveillance from our network for child neurology and psyhciatry there exist more rare situations when becuase of more easier symptoms and the effects of this conditions are later analysed in the adulthood. Even in such situations with the discovery of the effects of neurofibromatosis they can be corrected and the education for the patients is the first target and there is analysed the short, medium and long time impact of the condition on the patients and the family of the patients. Genetic conseilling is in nmost cases offered by the genetician specialist and the manager of the case will give precise indications and tasks in the team so that the preception of the sdisese in the staff to be coreect and the impact for the patient more easier to afford. Even if the nervous system can be involved, the impact on the daily life of the patient can be diminshed and even to get very low in the conditions of the modern medicine, and the accent will be put just on some vulnerabilities of the patient which he can very good manage if the patient is correctly directed and investigated but the team and a good and in time imagistic monitorisation. The calm, the tact and the good knowledge of the mechanisms of the diseaases lead to the succes of the correct management of the case and a favourable outcome. The life with neurofibromatosis cand be a normal one and without great risks if the education of the patient is adequate and the response of the professional staff is punctually for the needs and the questions of the patient.
- Subjects
PATIENT education; PATIENTS' families; PATIENT-family relations; SYMPTOMS; NEUROFIBROMATOSIS 1
- Publication
Journal for Neurology & Psychiatry of Child & Adolescent in Romania, 2021, Vol 27, Issue 1, p51
- ISSN
2068-8040
- Publication type
Article