ALS is a progressive disease affecting the neurons of the body. This neurodegenerative disease is also known as Lou Gehrig’s disease in honour of the famous baseball player, or as motor neurone disease.
There is currently no cure for ALS and the majority (90%) of people diagnosed with the disease will not live more than ten years. Most cases are fatal within three to five years of the first symptoms presenting.
Thibaut de Roux experienced ALS first-hand when a close friend succumbed to the condition. Since that time, he has made regular donations in support of the Thierry Latran Foundation which supports scientific, academic and industrial research into treatments.
There is no single identified underlying factor that causes ALS and the disease can affect people from all ethnicities and of all ages. However, most people who develop ALS first begin experiencing symptoms between the ages of around 55 and 75.
In people who do develop the condition at a younger age, there is a slighter higher incidence rate among males. However, among older people this evens out across the genders. Caucasians and non-Hispanics are more likely than others to develop ALS. There is also evidence to suggest that ALS is more prevalent in military veterans than in those with no military background. Although research is still being done into the reasons behind this, it is thought that factors such as exposure to toxins could be a factor.
In the early stages of ALS, the symptoms can vary drastically from person to person in terms of both type and severity. The most commonly reported symptom is fatigue in the limbs, leading to progressive weakening of the muscles. This can also present as difficulty in holding objects or picking things up, muscle cramping or twitching, or increased likelihood of falling over.
Other early symptoms may include trouble with speaking or swallowing. Bulbar onset ALS is where symptoms first present as issues with swallowing or speaking, while limb onset ALS is where symptoms begin in the arms and legs.
In the later stages of the disease depression is common, as individuals with ALS typically retain their cognitive function and higher mental processes. This leaves them aware of what is happening to them yet unable to do anything to prevent it. Respiratory issues are also common in the later stages as the muscles weaken.
There is no available cure for ALS at present and the estimated cost of developing a drug to stop or slow the disease is around $2 billion. However, there are several treatment options that can either slow down the progress of the disease or help to manage or alleviate pain and other symptoms.
Medications approved for use for ALS patients include edaravone and riluzole. The former is used to help slow the decline of daily functioning, while the latter is believed to reduce motor neurone damage. Riluzole treatment cannot reverse damage already done but has been shown to increase life expectancy by several months.
Physical therapy can help fight some of the symptoms of ALS including depression and fatigue. Occupational therapists may also be able to recommend devices to aid in mobility, such as wheelchairs, walkers, braces or ramps. Speech therapy can teach strategies to communicate in patients who are struggling with normal speech. Nutritional support can help prevent weight loss, which is associated with a more rapid progression of the disease.
Thibaut de Roux is a highly experienced business manager who has spent over a quarter of a century in leading roles in the global capital markets. He holds a degree in Economics and a Master of Finance and Management, both from the Paris Dauphine University. His passions include skiing, climbing and fine wines, particularly those from the Burgundy region of his home country of France.