Muscular Dystrophy (MD) is a lesser known disability that has a huge impact on people’s lives, and comes with a host of different challenges.
Pieter Joubert, 57, is the General Manager of the Muscular Dystrophy Foundation (MDF) of Gauteng, which is a non-profit organisation (NPO) that helps those who are living with this disability.
Pieter was diagnosed with facioscapulohumeral muscular dystrophy, and has been using a wheelchair for the past 16 years. “When I was diagnosed with MD, I did not know anything about the disease, which resulted in me having a lot of questions. It was also very difficult for me to accept what was going to happen. I try not to complain, as there are many people who are in worse situations than I am. I try to stay positive and to see the other blessings in my life, and do as much as I can,” he said.
He added that there are more than 40 types of the disease that result in progressive wasting and weakness of the muscles and each of the different types presents with various levels of severity and complexity. “MD can sometimes be inherited, when the defective gene that is responsible for the weakening of the muscles, is passed on from one generation to the next. But sometimes, it also occurs in families where there is no history of the condition,” he explained.
People disabled by severe MD face a daunting life challenge with the need for continued adaptation and increasing caregiver support, as there is no cure for this condition. This is where MDF Gauteng comes in.
“We strive to directly assist affected members and their families with valuable information, referrals to genetic counselling and other clinics, special equipment, emotional support and group support. We try to help them with assistive devices such as motorised wheelchairs, special wheelchair cushions, bath and shower chairs, bath lifts, ankle and feet braces, patient-lifting devices, pressure-relieving mattresses, ventilators and assistive coughing machines,” Pieter said.
But, MDF does not receive any funding from the government, and is dependent on donations from the community to help them survive, and continue to offer their support. “With your help, we can provide those with MD with the necessary assistive devices, as well as the support they need,” he said.
He added that they will be hosting a charity art auction on 26 May, in an effort to raise money for the Foundation, and said, “We have received a large number of artworks from local artists, which we will be selling at the Crouse Gallery, 368 Ontdekkers Road, Florida Park. The auction will start at 1pm. Even though we are calling our function an art auction, it will be a very informal, casual and fun event, where only a few of the larger pieces will go up for auction. The other pieces
will be sold at reasonable prices, as we really want to sell all of the pieces we have received, as it will mean more money for the Foundation.”
For more information on the art auction, or to find out how you can help, contact Robert Scott on 011 472 9824 or send an email to mdfgauteng@mdsa.org.za. Alternatively, visit their webpage at https://www.mdfgauteng.org.
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