Times of India
05 April 2010
By Kounteya Sinha
New Delhi, India

Nerve Disease Hits Indians 10 Yrs Before It Shows Up In Westerners
Indians are being diagnosed with the deadly Amyotrophic Lateral Sclerosis (ALS) a decade before their western counterparts. Also called Lou Gehrig’s disease, ALS is a rapidly progressive, invariably fatal neurological disease that attacks the all–important nerve cells.

Known to usually affect those in the 60s, the disease, according to experts, is being diagnosed in Indians who are in their late 30s and 40s. According to Dr Albert Ludolph, chairman of the European ALS and Motor Neuron Disease Group, who was recently in India to visit Max Hospital, the life expectancy of those suffering from it is two to three years after diagnosis.

What’s worse, no major cure is available for it. Doctors can at best only prolong the life of such patients for a few months with the drugs available. Ludolph said: “In India, we have seen this disease set in in the younger population. It affects Indians 10 years before it shows up in Europeans or Americans. We don’t know why. However, the progression of the disease is slower than that in westerners.”

The dreadful disease affects 18 million people globally, Ludolph said. “My estimate is that 1.5 lakh people die of ALS in India annually. The disease pattern in India is also different. Here, we find the Madras variety of ALS, the one that causes deafness.” Ludolph, who chairs the European Federation of Neurological Societies’ scientist panel, added: “What’s worse, we don’t have a cure for it. Several drug studies conducted in Europe and North America have proved unsuccessful. One drug is showing promise but it has a modest effect – close to four months of life expectancy improved.”

Dr J D Mukherji, head of the department of neurology at Max Hospital, said: “ALS is pretty common in India. But there is hardly any awareness of the disease among the public. Three in 1 lakh population above 50 years of age will develop ALS in India. My estimates are that 3 lakh people die of ALS every year.”

ALS affects men more often than women. Its onset is often so subtle that the symptoms are frequently overlooked. Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% patients.

The other earliest symptoms include twitching, cramping or stiffness of muscles, muscle weakness affecting an arm or a leg, slurred and nasal speech or difficulty in chewing or swallowing. Patients then have an increased problem with moving, swallowing and speaking or forming words.

Ludolph said: “The two techniques helping us prolong life of ALS patients are PEG – percutaneous endoscopic gastrostomy or a feeding tube. ALS patients can’t swallow, hampering their nutritional intake.

“Because their respiratory muscles start to waste, they also choke. PEG keeps them healthy by improving feeding. A BIPAP respiratory machine, on the other hand, helps them breathe.”

Early Warning

• Amyotrophic Lateral Sclerosis is a rapidly progressive, invariably fatal neurological disease that attacks nerve cells
• Known to usually affect those in the 60s, the disease, according to experts, is being diagnosed in Indians who are in their late 30s and 40s
• Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients
• The other earliest symptoms include twitching, cramping or stiffness of muscles, muscle weakness affecting an arm or a leg, nasal speech or difficulty in chewing or swallowing