The Muscular Dystrophy Foundation’s Gerda Brown dispels the myths around Muscular Dystrophy to help bring awareness and understanding to South Africa.
South Africa (13 July 2023) – Muscular Dystrophy is an umbrella term that includes more than 70 different genetically inherited muscle-wasting conditions. Statistically, it affects one in every 1 200 people, but in South Africa, many patients go undiagnosed, and therefore untreated. There are many myths about the condition but Gerda Brown is here to bust them!
It can be severe, and for many years was considered to be largely untreatable. This fact, combined with South Africa’s poor diagnostic ability, means the country has a poor understanding of what Muscular Dystrophy entails, and how affected patients and their surrounding communities can think about their approach to managing its impact.
“Muscular Dystrophy is much more common in our communities than we realise,” explains Gerda Brown, General Manager of the Muscular Dystrophy Foundation of South Africa (MDFSA) National Office.
“MDFSA is working as hard as it can to clarify common Muscular Dystrophy myths, which is a vital part of the overall education process.”
Myth #1 – Muscular Dystrophy can be ‘caught’
Muscular Dystrophy isn’t a communicable medical condition and doesn’t spread in the same way as illnesses such as Covid-19, or flu. It can’t, in other words, be passed from one person to another by physical contact.’
Its conditions can occur when there is no previous family history involved, but many are clearly genetically inherited, which means one or both parents carry damaged genes, which then affect one or more of their children.
Myth #2 – Only parents with Muscular Dystrophy can have children with Muscular Dystrophy
This is false. Many people live with ‘recessive’ Muscular Dystrophy genes, which means that they themselves are not affected by, or show symptoms of, Muscular Dystrophy. Although the damaged gene is very much part of their DNA, it is not ‘active’ in their physiology.
It is therefore perfectly possible for parents carrying recessive Muscular Dystrophy genes to have a child or children with Muscular Dystrophy.
Myth #3 – Muscular Dystrophy Only Affects Males
There is an element of truth to this idea, because Duchenne Muscular Dystrophy is inherited by an X-chromosome-linked recessive pattern, which means males are at an increased risk of being affected by this condition.
But, other forms of Muscular Dystrophy do not feature similar gender slants, and females are very much affected. Parents and Doctors should look out for symptoms in both genders.
Myth #4 – Nothing can be done
For many years people believed that there was no way to treat or manage the muscle wastage caused by Muscular Dystrophy, but in more recent times it is recognised that a professionally guided approach to exercise and physiotherapy can be beneficial in mitigating the impact. It is therefore vital for all Muscular Dystrophy patients to work actively with Doctors and Physiotherapists to develop an appropriate physical management programme.
It’s also important to note that new genetic therapies are emerging for several conditions within the Muscular Dystrophy umbrella – and that some few of these are starting to become available in South Africa. The process is slow, but access to new genetic treatments is improving, as is the number of conditions within the Muscular Dystrophy umbrella that are responding to genetic treatments.
Myth #5 – Life expectancy is very short
Some forms of Muscular Dystrophy are very severe, but it’s vital to bear in mind that each type of Muscular Dystrophy is different, and so is each individual’s journey.
Life expectancy is most often impacted when the heart and/or lungs are seriously affected by muscle wastage. But while it’s true that some patients have short life expectancies, it’s also true that many live well past middle age. Simply put, there is no one-case-fits-all life expectancy with Muscular Dystrophy.
For more information on Muscular Dystrophy, visit the Muscular Dystrophy Foundation of South Africa at www.mdsa.org.za
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