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).

Details of the DVDs are as follows:

Muscular Dystrophy: Caregivers Living with Duchenne Muscular Dystrophy

Early signs & diagnosis
Reactions & acceptance
Learning about the condition
Challenges
Coping strategies
Public awareness
Help & support
Message to others

Early days
Mobility aid
Overcoming challenges
Impact on lifestyle
Stigma
Medication & therapy
Support
Words of advice

We are pleased to share with you 2 chapters from each of the videos as an exclusive peek into what these have to offer.

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.

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 ofdeterioration and improve quality of life.

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.

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.

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.

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.

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