Everybody has heard of the Ice Bucket Challenge. Everybody knows the campaign’s viral spread started from luminaries like Facebook’s CEO Mark Zuckerberg and Microsoft’s founder Bill Gates, both — after pouring a bucket of ice water on themselves — donating to the ALS Association, a US-based non-governmental organisation founded almost 30 years ago to fight amyotrophic lateral sclerosis or, in short, ALS. The challenge eventually reached Thailand a few weeks ago with famous people soaking themselves, either willingly or unwillingly, and making donations to any charitable organisations. But how many of us know what ALS is?
“The Ice Bucket Challenge is definitely a blast because it is fun and at the same time it is for a good cause. But many of those who accepted the challenge, not to mention people in general, have no idea what ALS really is,” said Assist Prof Dr Phinit Limsukhon, neurologist and author of series on personal health Mor Pak Ma (Foul-mouthed Doctor) and Roo Tan Rok Roo Tan Mor (Know Your Diseases, See Through Your Doctor).
Illustration @ Gettyimages/Thinkstock
The popularity of this viral campaign is unusual. In weeks, the challenge became a global phenomenon with many big names doing it, including Steven Spielberg, Justin Bieber, Justin Timberlake, Lady Gaga, Britney Spears, Taylor Swift, Oprah Winfrey and Jennifer Lopez, among others.
In Thailand, the activity has become so quickly widespread that experts from the Prasat Neurological Institute under the Ministry of Public Health’s Department of Medical Services recently gave a word of warning that soaking oneself with ice water is likely to cause pneumonia, especially among those with chronic diseases like asthma, high blood pressure or heart-related symptoms. Accidents and infections caused by exposure to unhygienic water are also possible.
Despite the risks, according to figures from the ALS Association, the challenge has raised almost US$100 million (3 billion baht) since it started trending in late July which, in a way, signifies the positive force the operation has rendered.
But notwithstanding the ice bucket fad, Dr Phinit said that people should not be overly concerned of the prevalence of ALS because actually the occurrence is quite rare.
“Speaking of the occurrence, we cannot even think of it in terms of percentage,” the specialist noted. “The incidence of ALS is only one per several hundred thousand people.”
In Thailand, according to director of the Prasat Neurological Institute Boonchai Pipatvanichgul, there has been around 100 ALS patients receiving treatment at the Institute, 24 of which were in-patient cases and 10 had respiratory problems.
According to Dr Phinit, ALS is a non-contagious, neuro-degenerative disease that affects motor nerve cells in the brain and in the spinal cord. Also referred to as Lou Gehrig’s Disease, ALS is mostly not hereditary. According to the ALS Association, everybody has an equal chance of falling victim to the illness, regardless of race and nationality.
In most cases, ALS usually starts with muscle weakness. Muscle cramps and twitching are also common especially on the arms and tongue. Often, the twitching on the tongue becomes so severe that the tongue surface wrinkles. Muscle weakness will later spread to other parts of the body.
The cause of ALS is unknown, said Dr Phinit. Yet the diagnosis is paramount as there are several other diseases that show similarities in terms of signs and symptoms. They include muscle contraction, which is quite common and not harmful, cervical spondylosis, or the degeneration of the cervical spine, spinal cord tumour and muscle weakness caused by other factors such as nerve damage or leprosy.
“Wrong diagnosis can change a patient’s life because ALS is not curable,” said the neurologist. “If, for instance, a patient is diagnosed as suffering from ALS but actually he or she falls prey to curable cervical spondylosis, the patient will miss an opportunity to be treated properly. But on the other hand, if a patient is diagnosed as having degeneration of the cervical spine and then is sent for an operation but actually he or she has ALS, the situation is going to get much worse.”
And many times, ALS gets mistake for tics — rapid and repetitive contractions of a group of muscles usually occurring on the eyelids, cheeks and arms. Tics are harmless because they usually occur temporarily and in a certain area. But in the case of ALS, muscle contractions are chronic. They can last months or even years and they can be found all over the body.
ALS usually attacks people in their middle age. And despite its rarity, the disease is unfortunately life-threatening. Chinese Communist revolutionist and founding father of the People's Republic of China Mao Zedong died of ALS. Theoretical physicist Stephen Hawking also suffers from it.
"As the disease progresses, a patient's muscles will get weaker and weaker," the doctor explained. "After three years, patients are likely to have difficulty walking and swallowing. When motor nerves lose their functions, patients become paralysed, physically disabled and can end up with a lung infection, which results in death.
"On average, an ALS patient will die about five to six years after the diagnosis."
To date, there is no medication for ALS, said Dr Phinit. Supportive treatments are therefore key — both physically and emotionally.
"Emotional support is crucial for ALS patients," the specialist advised. "Encouraging regular exercise and a healthy lifestyle is essential."
For some people, new hope for ALS treatment lies in stem cell therapy in which stem cells are expected to help generate new nerve cells replacing degenerating cells. But according to Dr Phinit, stem cell therapy as a cure for ALS does not look that promising.
"The nervous system is very complicated," he said. "And who can assure what kind of cells stem cells will develop into? In such a complex body system, there is a likelihood that stem cells will not become the type of cells we want them to be and as a result, they can possibly end up becoming tumours."
With such rarity, incurability and unpreventability of ALS, the neurologist commented on the ice bucket craze that instead of focusing on popularising such an uncommon, unavoidable and non-infectious infirmity, people, especially Thais, should pay attention to and throw light on the country's other more significant public health issues like such chronic or communicable diseases as diabetes, tuberculosis and sexually transmitted diseases.
"Instead of making this Ice Bucket Challenge a trend, we'd better talk about other common diseases that need support in terms of research, treatments and prevention," Dr Phinit said.
"For Thais, ask yourself if our country has done enough to control and handle sexually transmitted diseases such as HIV/Aids or other communicable, preventable sicknesses."