Heijnen Lily, Buzzard Brenda B
van Creveldkliniek UMC Utrecht and Rehabilitation Centre De Trappenberg, Huizen, The Netherlands.
Semin Thromb Hemost. 2005 Nov;31(5):513-7. doi: 10.1055/s-2005-922222.
Without replacement therapy, patients with severe hemophilia (PWH) will have five damaged joints by the age of 20, which lead to limitation of activities and prevent normal participation in society. Of all PWH, 80% live in developing countries, where access to factor replacement is limited. Physiotherapy and rehabilitation help to prevent disabilities, stimulate activities and participation, and help to preserve autonomy. Rehabilitation should be organized by creating awareness that physiotherapy and rehabilitation (next to availability of safe clotting factor) are very important in developing countries. Locally available medical and social systems and materials should be used for both education and aids and adaptations. Trainers must be trained to develop local treatment protocols. PWH and their families need to be educated and trained to do exercises. Important treatment modalities are management of pain, active muscle strengthening exercises, combined measures and exercises to regain range of motion, training proprioception and coordination, functional training, and orthotics and shoe adaptations.
若不进行替代疗法,重度血友病患者(PWH)在20岁时将会有五个关节受损,这会导致活动受限并妨碍其正常融入社会。在所有PWH中,80%生活在发展中国家,这些国家获取凝血因子的途径有限。物理治疗和康复有助于预防残疾、促进活动和参与,并有助于保持自主性。应通过提高认识来组织康复工作,即物理治疗和康复(以及安全凝血因子的可及性)在发展中国家非常重要。应利用当地现有的医疗和社会系统以及材料进行教育、辅助器具和适应性调整。必须对培训人员进行培训,以制定当地的治疗方案。需要对PWH及其家人进行教育和培训,使其能够进行锻炼。重要的治疗方式包括疼痛管理、主动肌肉强化锻炼、恢复活动范围的综合措施和锻炼、本体感觉和协调训练、功能训练以及矫形器和鞋类适配。