Muscular Dystrophy in the spotlight

Across the world, September is Muscular Dystrophy (MD) awareness month, a time to shed light on the devastating impact of this muscle-wasting condition on individuals and their families.

However, in South Africa, there are still questions about whether the struggles faced by those affected are largely overlooked. MD is an umbrella term that describes a range of neuromuscular disorders that result in progressive muscle wasting.

A statement sent to the Roodepoort Record by Muscular Dystrophy Foundation Gauteng acting Manager Robert Scott highlights the reality of MD patients in South Africa, which includes lack of access to health care, lack of early screening, and the pressure families go through to cover the day-to-day costs.

“Muscular Dystrophy South Africa (MDFSA) is focused on raising national awareness about the struggles of MD patients and their families. These efforts involve urging the media to cover the challenges MD patients face and the lack of early screening and care.

“One of the most important roles of MDFSA is informing and educating the public about the work of the Foundation and muscular dystrophy. This is achieved through a strong online media footprint and awareness campaigns,” he says.

Another issue highlighted is the lack of early screening in both public and private hospitals. This means that a lot of people who have MD conditions could take crucial preventative interventions early on in life but are denied the opportunity to do so.

“To address this, South Africa must implement more comprehensive screening programs, educate healthcare professionals, and prioritise early detection to reduce long-term healthcare costs and improve patient outcomes.”

The statement also says in theory, MD patients are covered by the Prescribed Minimum Benefits (PMB) list, but it is poorly articulated, leading to funders rejecting claims for key services like physiotherapy and mobility aids. This lack of clarity has led to patients raising significant amounts of money to stay alive.

“MDFSA is also working to bring attention to the need for policy reform, especially regarding the revision of the PMB list and access to genetic treatments.

“Individuals and communities can get involved by raising awareness about MD through events and social media, volunteering with MDFSA, and supporting fundraising initiatives. They can also advocate for the rights of MD patients by writing to policymakers or participating in campaigns that call for better healthcare access,” Scott concluded.