Living with MD

In partnership with RealTime Health, MDAS has produced 2 Informational DVDs (with 8 chapters each) on the personal experiences of the MDAS members and their caregivers. These informational DVDs give a first-hand insight into the impact that Muscular Dystrophy has had on their lives, the challenges that they face and most importantly how they have overcome each of these challenges. The DVDs are available for sale at MDAS @ $40 each (non-member price).

肌肉萎缩症协会与RealTime Health合作，制作了两套教育DVD（各八集），分享肌肉萎缩症协会会员和他们的看护的个人经验。这些DVD通过受访者的亲身经历，让人们了解肌肉萎缩症对生活的影响、所面对的挑战，而更重要的是，他们如何克服这些挑战。有兴趣者，可在协会购买DVD，每套40元（非会员价格）。

Details of the DVDs are as follows:
DVD的内容如下：

MUSCULAR DYSTROPHY: CAREGIVERS
肌肉萎缩症患者的看护

Early signs & diagnosis 初期症状及诊断
Reactions & acceptance 如何反应及接受
Learning about the condition 了解病症
Challenges 挑战
Coping strategies 应对策略
Public awareness 公共意识
Help & support 援助与扶持
Message to others 传达给大家的信息

LIVING WITH DUCHENNE MUSCULAR DYSTROPHY
与杜氏肌营养不良症患者相伴

Early days 初期阶段
Mobility aid 助行工具
Overcoming challenges 克服挑战
Impact on lifestyle 对生活方式的影响
Stigma 负面标签
Medication & therapy 药物及治疗
Support 扶持方式
Words of advice 忠告

We are pleased to share with you 2 chapters from each of the videos as an exclusive peek into what these have to offer.
我们很高兴与您分享其中两集视频的内容，帮助您了解肌肉萎缩症。

Muscular Dystrophy: Caregivers
肌肉萎缩症患者的看护

Muscular Dystrophy (MD) refers to a group of inherited muscular disorders that arise due to gene abnormalities. A few defining characteristics include the development of muscle weakness, wasting and contractures which deteriorates over time. The muscle weakness often begins in the legs and therefore impedes walking. As a result, individuals with the condition will increasingly need to rely on leg and hand braces, and then eventually a wheelchair for mobility.
肌肉萎缩症指的是一组由基因异常引发的遗传肌肉疾病。其中一些症状包括肌肉无力、衰弱和逐渐恶化的挛缩情况。肌肉无力的症状一般上出现在腿部，影响患者的行走能力。在这种情况下，患者必需依赖腿部和手部支架，随着病情恶化，最终需要以轮椅代步。

With few exceptions, most types of MD manifest in childhood. While there is no known cure for muscular dystrophy, treatment such as medications and physiotherapy can help to slow the course of deterioration and improve quality of life.
大部分肌肉萎缩症在患者童年时发病，除了一些例外。尽管肌肉萎缩症目前是不愈之症，但通过药物和物理治疗等可减缓病情恶化的速度，改善生活素质。

This ‘Speaking from Experience’ program offers first-hand accounts from five caregivers who care for their loved ones with MD. They discuss the impact the condition has had on their lives, the strategies to manage it, and the challenges it brings to everyday life.
这一集通过五名照顾肌肉萎缩症患者的看护的亲生经历，讨论这个疾病对他们的生活的影响、应对病症的政策，以及对日常生活带来的挑战。

Living with Duchenne Muscular Dystrophy
与杜氏肌营养不良症患者相伴

Duchenne Muscular Dystrophy (DMD) is a progressive form of Muscular Dystrophy that mostly occurs in boys. In most cases, the condition is caused by an inherited gene mutation. However, the mutation may also occur spontaneously.
杜氏肌营养不良症患是一种症状逐渐恶化的肌肉萎缩症，主要影响男童。这个病症大部分是因遗传突变基因所引发。不过，基因也可能自发突变。

The symptoms of DMD usually appear as early as 5 years old. Individuals who have DMD experience progressive loss of muscle function and weakness, which begins in the lower limbs. Eventually this weakness spreads to the arms, neck, and other areas. Over time, muscles in the chest may also be affected, resulting in the need to rely on respiratory aids for breathing. While there is no known cure for Duchenne Muscular Dystrophy, treatments such as medications and physiotherapy have been known to maintain muscle function for a longer period of time and improve the quality of life of people with DMD.
这个病症的症状一般上在患者五岁时出现，他们会逐渐失去肌肉功能和感到无力，通常是从下肢开始。肌肉无力的症状最终会扩散到手臂、颈项和其他部位。过了一段时间，胸部的肌肉也会受影响，以致需要依赖呼吸器来帮助呼吸。尽管杜氏肌营养不良症目前是不愈之症，但通过药物和物理治疗等可减长时间维持肌肉功能，改善生活素质。

These ‘Speaking from Experience’ video clips offer first-hand accounts from five people living with DMD. They discuss with unprecedented candour how the condition has affected their daily living and how they chose to cope with it.
这一集通过五名杜氏肌营养不良症患者的亲身经历，坦率地讨论患病如何影响他们的日常生活，以及他们如何去应对病情。