The scrum of his life
Posted on 30 March 2017
Joost van der Westhuizen’s performance in the number 9 jersey was legendary, but his battle against motor neuron disease made him a true hero. Here’s the story behind the condition.
Joost has been described as one of the best scrumhalfs of all time. He was a key member of the World Cup-winning Springbok team in 1995, making some legendary tackles against the virtually unstoppable All Black Jonah Lomu in the final. But just five years after retiring from international rugby in November 2003, he started noticing a weakness in his right arm, which he put down to an old rugby injury. Joost described his journey to being diagnosed with motor neuron disease (MND) on his J9 Foundation website:
‘It was a sunny afternoon in Johannesburg in March 2011. I was in the pool with a doctor friend of mine, playing games with my son. ‘Dr Henry Kelbrick noticed that my right arm was lagging slightly and he asked me if I had experienced weakness in my arm. He also noticed that my speech was slurred and decided to send me to a neurologist for tests.’ Joost’s diagnosis was a devastating blow, but his winning spirit and optimistic outlook saw him outlive the original prognosis of two to five years – until he gave up the fight on 6 February 2017.
What causes MND?
‘There is a suggestion that professional sportsmen and women have a slightly increased risk of developing the disease, but this is not yet clearly established,’ says Dr Izak Burger, a neurologist at Mediclinic Panorama. ‘Significant research is taking place – especially regarding the causes, pathogenesis and genetics that underlie this disease – in the hope that this will one day lead to an effective treatment. No imminent breakthroughs are on the horizon, though,’ he adds. Despite ongoing research, no one can say for sure what causes MND. It is, however, suggested that it could be the result of an environmental toxin, trauma, a latent virus, or even a defect that causes premature degeneration of the nerves. There are also some forms of the disease which appear to be hereditary, but these are rare.
What are the symptoms? In the early stages of the disease, MND generally only affects one side of the body. ‘The early symptoms are painless,’ says Dr Burger. ‘MND presents as a slowly progressive weakness of a limb, sometimes it starts with swallowing and speech problems. ‘While MND is easy to diagnose, its unfavourable prognosis means that most neurologists would consult with their colleagues before making a final diagnosis,’ adds Dr Burger. ‘There is no curative treatment and the management is focused on support both physically and psychologically with focus on nutrition, maintenance of function and respiratory health.’
As there isn’t a single diagnostic test for MND. A neurologist would have to conduct a series of assessments to rule out other conditions that present with similar symptoms. Who is at risk? MND affects men and women more or less equally. The incidence and prevalence is very much the same throughout the world, with an incidence of 1-3 afflicted in every 100 000 people. ‘The disease can start as early as in a patient’s 20s, but the most common onset is after age 60 – after the age of 85 it becomes very rare,’ says Dr Burger. Dr Burger adds that the mean time from onset of MND to death is three years. But patients with certain subtypes can sometimes live for more than 10 years.
What is MND?
MND or amyotrophic lateral sclerosis (ALS) is when the nerves (or motor neurons) that send messages to the muscles progressively weaken. This is known as neurodegeneration.
A light in the dark
After he was diagnosed with MND, Joost launched the J9 Foundation, which aims to raise awareness, provide support and improve the quality of life for those affected by the condition. The foundation also helped initiate MND research in South Africa, where none had existed before. Similarly, The South African Motor Neuron Disease Association is dedicated to providing a voice for and offer support to MND patients and their loved ones.
• Visit www.joost.co.za and www.mnda.org.za for more information.
Other famous MND Sufferers
• Lou Gehrig
MND is commonly referred to as Lou Gehrig’s disease in the US, after the celebrated 1930s New York Yankees player.
• Stephen Hawking
Diagnosed at 21, the brilliant physicist is probably the longest surviving person with MND. At 75, he’s still active in research and has regular public speaking engagements.
• Jenifer Estess
The theatre producer founded Project ALS, which has raised millions of dollars towards MND research. Her memoir, Tales from the Bed, was adapted into a film.
• David Niven
British Oscar-winning actor and writer, known for his role as Phileas Fogg in Around the World in 80 Days.
• Morrie Schwartz
The professor who was immortalised in the Mitch Albom memoir Tuesdays with Morrie.
• Mao Tse-Tung
Revolutionary and first leader of the People’s Republic of China.
Words Nicci Botha
See more articles from the Mediclinic Family magazine here.