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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.
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.