MDF Magazine Newsletter Issue 57 December 2018

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National September was Muscular Dystrophy Awareness Month Because public knowledge of muscular dystrophy is limited, attitudes towards people with muscular dystrophy are sometimes based on ignorance and can cause humiliation. Some might even believe that people with muscular dystrophy could do more if they just tried harder, or that they pretend to be unable to do something because they just don’t want to, and that if they were just to exercise more they would become stronger. When people are properly informed about muscular dystrophy, their attitudes and behaviour towards affected people become more reasonable and sensitive; thus, discussing disability increases understanding and tolerance. This helps to minimise the psychological stress that muscular dystrophy sufferers might otherwise experience when interacting with others. September was International Muscular Dystrophy Awareness Month, which is an important time for all persons affected by muscular dystrophy. In order to celebrate this special month, the National Office launched a new online awareness programme called “Get into the green scene” – green being the colour of the muscular dystrophy ribbon. The objectives of the programme were two-fold. Firstly, all the MDSA Facebook followers were requested to change their Facebook and WhatsApp profile pictures to the “Get into the Green scene” logo. Secondly, our Facebook followers and members were invited to share photos on our Facebook wall where they have “gone green”. From the photos it was clear that everyone had a lot of fun. Thank you very much to Lemique Consulting, Newcastle Post Office, West Rand School, the <strong>MDF</strong> branches and our members for making this campaign a huge success. 6 Muscles Green By Emile Smith My muscles became green It's quite a colourful scene I'm planted in the ground My wheelchair need sound Winter left me bleak I'm no more weak Can you see a blossom? It's green and I'm awesome I try my best Just chilax with the rest These muscles is bit slow My wheels on the go My muscles became green It's the colour of the winning scene.
MD Some facts about Duchenne and Becker muscular dystrophy What is Duchenne/Becker muscular dystrophy? Duchenne muscular dystrophy (DMD) is the most common and serious neuromuscular genetic disorder diagnosed in childhood. It is a progressive disorder that causes muscles to become weaker over time until it affects the whole body. DMD mostly affects boys and reaches across all races and cultures. Although genetic disorders are usually passed down from a parent to a child, Duchenne and Becker muscular dystrophy (BMD) can spontaneously occur even if no one in the family has had it before. Becker muscular dystrophy occurs when dystrophin is manufactured, although not in the normal form or amount. Because of this, people with Becker are more mildly affected and have a slower progression than people with Duchenne. As with Duchenne, Becker can be inherited from a parent or can be caused by a new or spontaneous mutation in the dystrophin gene. The symptoms of Becker can begin in childhood, the teenage years, or even later. PPMD’s mission and work extends to both Duchenne and Becker (both considered ‘dystrophinopathies’), but for simplicity we primarily refer to Duchenne. DMD is a “gender-linked or “X-linked” disorder. Males are born with one X-chromosome (from mom) and one Y-chromosome (from dad). Because males only have one X chromosome, if the X-chromosome they receive has a gene mutation that causes Duchenne, the male will be born with Duchenne. Females are born with two X-chromosomes (one from mom and one from dad). If females have one X-chromosome that has a gene mutation for Duchenne, the body will generally choose to “activate” the other normal X chromosome. If this happens, the female will be a carrier of Duchenne. This means that she can pass Duchenne on to her sons (her daughters can also be carriers) but she herself will have few, if any, symptoms of Duchenne. If the female’s body, for whatever reason, chooses to activate the X chromosome with the mutation for Duchenne, the female will still be a Duchenne carrier, but will also “manifest” symptoms of Duchenne. She will then be a “manifesting carrier” of Duchenne. What causes the symptoms? Parent Project Muscular Dystrophy writes as follows (©<strong>2018</strong>): Duchenne is caused by mutations in the gene that encodes for a muscle protein called dystrophin. Dystrophin is in every single muscle fibre in our bodies. Dystrophin acts as the glue that holds muscles together and the “shock absorber” that allows muscles to contract and relax without being damaged. Without dystrophin, muscles are not able to function or repair themselves properly. As muscles are used for normal day-to-day activity, tiny tears are created in the muscle. Because there is no dystrophin, the muscles can’t repair themselves by making new muscle, so the damaged muscle is replaced by fat and scar tissue. As muscle is replaced, the person with Duchenne loses muscle function and strength. There are many muscles in the body (skeletal muscles, heart muscles, breathing muscles, etc.). Because there are so many muscles in the body, many parts of the body can be affected by Duchenne. For that reason, people living with Duchenne need care for many areas of the body. What are the symptoms of DMD and which muscles are affected? The DMD fact sheet of the Muscular Dystrophy Foundation of South Africa (2000b) provides the following information: Most affected boys develop the first sign, which is difficulty in walking, at the age of 1 to 3 years. By approximately 8 to 11 years they become unable to walk. By their late teens to early twenties the weakness is usually serious enough to put their lives at risk. Boys affected by DMD often walk on their toes with their abdomen pushed forwards and with a waddling gait. This is due to weakness of pelvic muscles, which normally extend to the hips in order to retain the upright position when standing. When these muscles are weak there is a tendency for the pelvis to tilt forward, and to compensate for this the 7
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Page 11 and 12: The role of oxidative stress in FSH
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Page 15 and 16: These days Sylvester has settled do
Page 17 and 18: Events The music therapist After de
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Page 45 and 46: Our son Matthew Wilson By Cindy Fra

MDF Magazine Newsletter Issue 57 December 2018

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