MND needs awareness
Blog by Dr Rob Henderson
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Motor Neurone disease (MND) is also known as amyotrophic lateral sclerosis (ALS) and Lou Gehrig’s disease. In 2011, it remains a rapidly fatal disease for which the underlying mechanism is unknown.
It is a disease of nerve pathways affecting the brain, spinal cord and body. These nerve pathways control the movement of muscles. The disease means that weakness occurs progressively affecting speech, swallow, movement of the arms and legs and eventually breathing. It is a disease that affects all races, with an average age of 55 years, and an average survival of 3 years. However within these bare facts, a great deal of variability occurs.
There are some peculiar, unexplained facts about MND: men are slightly more affected than women, and there are distinct patterns in how the disease starts. In women it can begin with the loss of speech and the ability to swallow, while in men it begins with weakness in the arms.
MND is only rarely inherited, fortunately in less than 10 percent of cases. MND spares all other parts of the nervous system, such as sensation, bladder and bowel function, vision and hearing (with the rare exception of involvement of emotions). Further, it doesn't impact organs.
One difficulty in understanding MND is the inability to study it in its early stages because by the time a patient is diagnosed it's they've usually had it for more than a year once.
Symptom management, supporting breathing function, and consideration of nutrition remain the cornerstone of therapy. However, over 100 drugs have shown promise, but only one drug, Riluzole has translated into an available drug therapy. The benefit from this drug is modest, with an increased survival of less than a year. One recent promising advance has been a major international clinical trial that combines a new therapy with Riluzole - the results will hopefully be available later in 2012.
But, with a lack of effective therapies, MND patients often turn to unproven therapies, widely promoted on the internet, such as stem cells therapies that are in their infancy.
MND is a disease for which there is a need for awareness, support and research. It is a disease that does not attract clinical funding from major government sources. If the effort that has gone into research into HIV could be translated into MND, then it is likely that much more would be known, with major clinical trials and effective therapies available.
