In life, just because you ignore something doesn’t mean it’s not there. For the Muscular Dystrophy Foundation of South Africa (MDFSA), people affected by the disorder not coming forward is one of their main concerns.
“One in every 1 200 people is affected by some type of muscular dystrophy. So if you are in a place with 1 200 people, one of them statistically should be affected, but where are they? Too many people are ashamed, or ignore it, or don’t know that this is what they are suffering from,” stated Rothea Louw, the General Manager of the Gauteng branch of MDFSA.
Another problem this organisation faces, especially with their head office being in Florida, is that the further away from Roodepoort someone is, the less they know about the Foundation and how they can help. MDFSA was founded in 1974 by two loving parents, Mr and Mrs Newton Walker, whose son suffered from Duchenne Muscular Dystrophy. They, together with Wally Gough of the Rotary Club of Potchefstroom and representatives of Cripple Care Association formed the Foundation.
MD is usually inherited; however, it can occur in families with no prior history of the condition. The unknowns make this disorder all the more terrifying, it can affect you at any age, and because it is a progressive disorder, the symptoms only get worse over time. Sadly, there is no cure for muscular dystrophy, but medications and therapy can help manage the symptoms and slow the progression of the disease.
The measures that can be put in place to slow the course of the disease and make life more comfortable are extremely important, which is why MDFSA wants to reach as many people as possible – not only to raise awareness about MD and teach people about its effects and treatment options, but to help the families who cannot afford to help themselves. MDFSA offers counselling for those affected, helps with finding the perfect care facilities and schools (for children affected by MD) and assists with equipment such as wheelchairs and walkers for those from impoverished communities. The counselling not only includes sessions with social workers, but also local support groups so that those who are affected do not have to feel alone, and have an emotional outlet in a safe place with people who know what they are going through.
MDFSA’s local office can be found at 12 Botes Street in Florida Park. They can be contacted on 011 472 9824 for more information about how they help, any advice for those affected, and to assist with any questions relating to MD. This information can also be found on their website, www.mdsa.org.za or by emailing rabie@mdsa.org.za.
