A mysterious disease

For the residents of Malnad region, a rare disease has crippled them, both figuratively and literally. The disease is so rare outside this region that it has been named after the village in Shivamogga district where it was first discovered in 1974. It is called Handigodu Syndrome. It has also been noted in residents of Chikkamagaluru. While the causative factor has not been found yet, it has been reported in people who consume meat and in members of the Scheduled Caste community. There is as yet no cure for it.

In Shivamogga district’s Sagara region, 320 cases of Handigodu Syndrome have been recorded till now; 52 in Thirthahalli, 16 in Soraba and 21 in Hosanagara. Nearly 500 cases have been recorded in Chikkamagaluru. However, no new cases have been seen in the last 10 years.

“The cause of this disease is not known, but the Indian Council of Medical Research (ICMR), Kanpur, suspects that it is either hereditary or due to environmental factors”, says Dr Vasudev, an orthopaedic surgeon. “The affected person has lower back pain, joint pain, and difficulty in walking, sitting or standing.”

The government has provided a Handigodu mobile unit, and Dr Vasudev has a team working on it every month, providing free door-to-door treatment. Patients are also likely to witness swelling in the hips and knee joints, which can be seen as early as 25 years of age. The syndrome is of following types: dwarfism, handicap. A person can suffer from both handicap and dwarfism. There can also be deformation of the limbs. While most patients are women, a higher mortality rate has been noted in men.

Rajendra Bandhagadhe is a victim of Handigodu Syndrome. “I am 54 and I have been suffering from this for the last 25 years. I was normal like others, I used to work as a coolie, now my condition is such that my wife is working and taking care of our family. Every month, we get treated by the Handigodu mobile unit. They give us iron tablets and diclofenac painkiller, but it is only for temporary relief, there is no permanent cure. Not only me, my mother and her sister also suffer from this,” Bandhagadhe says.

Omkar Chikkabedagunjji, another patient, revealed his daily struggles. ‘’I am suffering from the disease for 16 years. My legs and hand joints are deformed. I don’t have a job. I am from a poor family but I have no option but to stay at home. The government is providing us pension of Rs 1,400 now in view of my disability, but I cannot manage the family with this amount. This pain kills me every day. I can neither live nor die.”

Vedashree is just 24 years old, but this debilitating syndrome has already impacted her life in many ways. “I was affected by this disease when I was nine. My brother Subramanaiah, who is 28, also suffers from it since childhood. I am 24 and nobody is willing to marry me. My mother is upset that both her children are suffering from this disease.”

Handigodu Syndrome was first noticed by H M Chandrashekar after people started complaining about unusual body pain in the villages of Shivamogga. He took the issue to the government and supported the people who were affected.

“I was the one who brought this syndrome to the notice of the government”, says the activist. “We fought for the pension for these people. I am 80 years old, and I am still trying my best to fix their problems.”

“We collected about 300 blood samples for research and figured out that the reason for it is in the genes”, says Dr Venugopal, a scientist at Mysore Anthropology Centre. “But we have to find out the type of genes and how it is being transferred. For that, we need to collect tissue samples from the people. We don’t know when are we going to start this, but it will be soon”.

Government support

The government has built a hostel for children suffering from the disease in Handigodu village in Sagara taluk, Shivamogga. The children are being given nutritious food, medicine and education as well as free medical treatments and physiotherapy. A special identification card has been given to all people affected by the disease.

Shivappa Hodagatte, another patient, says, “I broke down when I was diagnosed with this disease and told that it has no cure and that I will have to suffer pain all my life. I have lost all hope. I feel like I am living my life in hell. I am on the bed all the time. I need someone to support me even when I am taking bath. That is when I feel most hopeless.”

The victims of Handigodu Syndrome and their families are now seeking answers. They want to know why this disease is so widespread in this region, but virtually unknown outside it. They want the Indian Council of Medical Research (ICMR), Kanpur, to break its silence and answer their questions and tell them if there is a cure or ever will be.

The ICMR has conducted research on the disease twice. The people of the region are also requesting the government to provide some kind of employment for those suffering from it. Will the government do something about it?

(The writer is a member of The NewsCart, a Bengaluru-based media startup)