Amyotrophic Lateral Sclerosis, commonly known as ALS, is a neurodegenerative disease that poses considerable challenges for patients and caregivers in India, despite its infrequency. ALS considerably affects the lives of those with the condition due to its progressive nature and the current lack of effective treatment.
Also known as Lou Gehrig’s disease – named after a renowned baseball player who succumbed to the disease – ALS is a motor neuron disease that is both rare and fatal. This disease belongs to a group of disorders known for severely hampering the functions of nerves and muscles, arguably being one of the most devastating of these disorders.
The Nature of ALS
ALS is characterized by the gradual degeneration of nerve cells in the brain and spinal cord. As the motor neurons begin to degenerate and ultimately die, they cease to send messages to muscles. This leads to muscle weakening, twitching (fasciculations), and wasting away (atrophy).
Eventually, the disease results in the brain losing its ability to initiate and control voluntary movements – the kind of movements that are under our control, such as walking, running, and sitting. Conversely, involuntary movements which aren’t under our control aren’t affected by this disease.
The Unknown Causes of ALS
The causes of ALS are largely unknown to the medical community. In a small number of cases, genetics play a role in the onset of the disease. Presently, research into ALS is focused on uncovering potential environmental causes.
Symptoms of ALS
Symptoms of ALS typically manifest as limb weakness, which develops over days or weeks. Subsequently, several weeks to months later, another limb exhibits similar signs of weakness. In some instances, the initial problem may be slurred speech or difficulty in swallowing.
ALS Treatments
Currently, there is no cure or proven treatment for ALS. This lack of effective treatment options further contributes to the disease’s devastating impact on patients and their families.
Initiatives to Tackle ALS
The Indian Government’s National Policy for Rare Diseases (NPRD), launched in 2021, has been a significant step forward in tackling conditions such as ALS. The policy includes a crucial provision that offers financial aid, up to Rs. 50 lakh, to patients afflicted by rare diseases, including ALS, who receive treatment at designated Centers of Excellence.
World Health Organization (WHO) on Rare Diseases
The World Health Organisation (WHO) characterizes rare diseases as debilitating conditions with a prevalence of 1 or less per 1000 population. This categorization includes conditions like ALS.
Through its policy initiative, the Indian government aims to support individuals affected by such diseases by providing considerable financial assistance for their treatment.