Huntington Disease In India

We have no formal estimates of the number of people affected by HD in India due to lack of population level studies. Besides the number of people with HD at one point of time, the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease.

Today in India, we lack specialized care for diseases such as HD and a pessimism towards the treatment of genetic disorders. Patients are left with nil or minimal care from the state sponsored and private hospitals primarily due to the attitudes towards the disease. Many HD patients are deserted by the family members partly because of lack of resources to manage them. There is no national policy addressing the specific needs of the patients adding to the prevailing medical helplessness. There is no census on HD in India. Due to the stigma that prevents individuals from seeking medical help, the provisional estimate of prevalence is expected to be less than actual prevalence. Most importantly the projected prevalence for the coming generations is exponential because of the transgenerational transmission. In the past 3-4 decades, there is an increased awareness in the rest of the world that culminated in several organizations at national and international level dedicated to improving the lives of HD families with medical care, rehab care and drug discovery research addressing the issues at policy level. With the inspiration of such organizations, we in India for the first time are coming together to form a national society (Huntington’s disease society India) that works for the welfare of HD families.

Where To Contact?

When symptoms of HD are seen, it is best to consult neurologist/psychiatrist in your city or town. Explain the condition and its evolution in a temporal sequence and mention the family history which enables the physician to understand the disease better. There is a lack of awareness about HD even in the medical community in India at present, one of the reason being its rare occurrence.

When there is lack of clarity about the diagnosis, consulting NIMHANS, Bengaluru is highly recommended which is trying to establish speciality care for HD and facility for genetic testing. Other Govt centres like AIIMS, PGIMER, SCIMT, JIPMER, CMC are leading centres in the country for speciality care. In due course, we hope that a series of HD speciality clinics across the country will be established in such reputed centres under one belt with standard treatment protocols.
HDSI is working towards this cause of creating awareness among affected people, doctors, researchers, advocates and general public. We are still in nascent stage.