7 SEPTEMBER is World Duchenne Awareness Day, and what better way to celebrate then to create awareness and acknowledge those who have made great strides and reached milestones.
Duchenne is a form of muscular dystrophy and it worsens quickly. Duchenne muscular dystrophy is caused by a lack of dystrophin (a protein in the muscles). However, it often occurs in people without a known family history of the condition, and because of the way the disease is inherited, it usually affects boys.
Yashoden Moodaly from Westville was diagnosed with Duchenne at a very young age. He will be turning 21 in October.
He has been doing research on how Duchenne is diagnosed and he wants to raise awareness as a career.
“I would like people to know how it is diagnosed. I would love to give back by creating awareness,” said Moodaly.
He said that he is very fortunate to have a home and family, “There are a lot of families that can’t afford the medical treatments and equipment,” he added.
Pam Moodaly, Yashoden’s mom, said Duchenne is a very expensive disease to treat. She said parents have to be proactive, do research and be educated about Duchenne and treatments.
Heather Ainswath, administrator and fundraiser for the Muscular Dystrophy Foundation KZN, said, “Not many children with Duchenne get to finish matric due to their disability. It was a great achievement when Yashoden completed matric at The Open Air School.”
Ainswath also highlighted that there is not enough interest being shown by the government and society about Duchenne. Pam said that society needs to be more wheelchair friendly.
Symptoms of Duchenne usually appear before age six and may appear as early as infancy. They may include:
Learning difficulties (the IQ can be below 75)
Muscle weakness: begins in the legs and pelvis but also occurs less severely in the arms, neck, and other areas of the body
Problems with motor skills (running, hopping, jumping)
Trouble getting up from a lying position or climbing stairs
Weakness quickly gets worse
Progressive difficulty walking: ability to walk may be lost by age 12, and the child will have to use a wheelchair
Breathing difficulties and heart disease usually start by age 20
To contact the Muscular Dystrophy Foundation-KZN Branch go to www.mdsa.org.za or call Heather on 031 332 0211.