This paper explores the experience of ten individuals living in the UK who were in the pre-manifest stage of Huntington's disease (HD), a genetic neurodegenerative condition. Data were gathered using semi-structured interviews and analyzed using interpretative phenomenological analysis. Three themes were reported from the data: ‘feeling limited by time’, ‘the perception of stalling time’, and ‘making the most of time’, all highlighting the way in which time holds significant meaning when living in the pre-manifest stage of HD. This study has highlighted the difficulties experienced by individuals when adjusting to the pre-manifest stage of HD. Feeling able to manage their anxieties and dealing with ongoing uncertainty related to future deterioration was key to supporting their wellbeing, facilitated by factors such as positivity and hope. Individuals may benefit from counseling which supports them to develop proactive coping strategies to manage their anxieties and acceptance of an uncertain future.

中文翻译：

---

生活在亨廷顿病前期阶段的英国个体样本的经验：解释性现象学分析

本文探讨了生活在英国的十个人的经历，这些人处于亨廷顿病 (HD) 的表现前阶段，这是一种遗传性神经退行性疾病。使用半结构化访谈收集数据，并使用解释性现象学分析进行分析。数据报告了三个主题：“感觉被时间限制”、“对时间停滞的感知”和“充分利用时间”，所有这些都突出了生活在表现前阶段时时间具有重要意义的方式的高清。这项研究强调了个人在适应 HD 表现前阶段时所经历的困难。感觉能够控制他们的焦虑并处理与未来恶化相关的持续不确定性是支持他们幸福的关键，这得益于积极和希望等因素。