‘Cell damage causes motor neurone disease’

Published Apr 24, 2015

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Cape Town – The fact that three rugby players are among the more high-profile cases of motor neurone disease does not mean that physical contact sports like rugby caused the disease, a top city neurosurgeon has said.

A local former club rugby player, and later coach, John van Dyk, was diagnosed with the disease in October last year, his wife Yolanda said this week.

Van Dyk was at one stage a teammate of Springbok player Tinus Linee at the Northerns Rugby Club. Linee died of the disease on November 3 last year, aged 45. The most famous case of the disease in this country is that of former Springbok scrum-half Joost van der Westhuizen.

“How many people play rugby around the world? Millions? And how many of them have motor neurone disease,” asked Dr Fred Kieck, neurosurgeon at Vincent Pallotti Hospital.

Kieck said the main cause of the disease was genetic cell damage. “It is the same as saying cellphones cause brain cancer just because a number of people who used cellphones got it. There are literally billions of people around the world who use cell phones. The same goes for rugby. There are probably millions of people in the world who play or have played rugby.

“It is a complex series of diseases, all with essentially the same outcome. Nerve cells in the spinal cord and in the muscles lose their function and as a result muscles stop working and start wasting away.”

Kieck said there was no treatment for the disease itself. “The treatment given to sufferers is mainly supportive. As the muscles stop functioning, the person increasingly requires help with things.”

Kieck said although the sufferer’s speech was affected, it did not mean the brain was affected.

The focus of research into MND is on the disease’s mechanism, said Dr Franclo Henning of the University of Stellenbosch Medical School’s neurology department.

Henning is recognised as one of the country’s top specialists dealing with MND and is the chairman of the Motor Neuronee Disease Association.

“The reason is quite simple – to be able treat a disease, one has to understand how and why the disease develops,” he said. “So, although the scientific and medical community may sometimes appear to obsess over the mechanisms of a disease instead of focusing on effective treatment, the truth is that effective treatment would only be possible if the mechanisms are understood.

“And this is extremely problematic in the case of MND. Most (if not all) experts and researchers now agree that MND is not a single disease, but rather a group of diseases with similar characteristics but different causes and disease mechanisms.

“For example, some cases of MND are caused by genetic mutations, others not. Even those with a genetic cause differ from each other and are caused by mutations in different genes that are not related functionally.

“So, although it may often appear to people living with MND as if there is no progress, the truth is that a lot is happening behind the scenes. At the moment, pharmaceutical companies are developing drugs based on what we have learnt about disease mechanisms over the past few years.”

Henning said one example of a drug being tested (in the US) is GM604, which has showed promising results in preliminary studies.

“With regards to prevention: again, in order to prevent a disease one has to know what causes it. At the moment it seems that 5-10 percent of cases of MND are caused by a genetic mutation. The causes in the other 90-95 percent is still unclear, despite extensive research.

“It is highly unlikely that a single cause is responsible for the rest, as explained above. Most clinicians and researchers agree that the answer probably lies in gene-environment interactions, in other words, certain environmental factors may lead to MND in someone who is genetically susceptible. This is, however, still a theory that remains to be proven.”

Meanwhile, the Motor Neuronee Disease Association has been formed to offer a support group to sufferers and their families, said vice-chairwoman Sheila Kendal. “Our mission is to provide a service to MND sufferers by loaning out equipment, monthly support groups, home visits, counselling patients and their families and quarterly newsletters.

“Our head office is in Pinelands which was established in 1993, we have branches in Johannesburg, KwaZulu-Natal, the Eastern Cape and the Western Cape, where we don’t have consultants, we do telephonic communication.”

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Cape Argus

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