Donohue J A
Orthop Nurs. 1995 Jul-Aug;14(4):32-4, 56. doi: 10.1097/00006416-199507000-00006.
Neurofibromatosis (Von Recklinghausen disease) is a genetically transmitted, multisystemic disorder characterized by abnormalities of the skin, peripheral nerves, bone, and soft tissue. Symptoms appear early in life and vary with the type and severity of the disease. Care of patients with neurofibromatosis (NF) presents a complex challenge for nursing, the multidisciplinary team, and the family. This article profiles the progression of neurofibromatosis in one girl from birth through adolescence. The author emphasizes that while health care workers ably provide expertise and assistance, the ultimate responsibility for decision making rests with the child and her family.
神经纤维瘤病(冯雷克林霍增氏病)是一种遗传性多系统疾病,其特征为皮肤、周围神经、骨骼和软组织异常。症状在生命早期出现,并因疾病类型和严重程度而异。对神经纤维瘤病(NF)患者的护理对护士、多学科团队和家庭来说都是一项复杂的挑战。本文介绍了一名女孩从出生到青春期神经纤维瘤病的发展过程。作者强调,虽然医护人员能够提供专业知识和帮助,但最终的决策责任在于孩子及其家人。