Early Detection of
Saukhyam is the project by Prajaahita Foundation, functions for the development and wellbeing of people with disabilities. We have been conducting various webinars under the supervision and guidance of experts on the health-care awareness for the people with disabilities. A webinar session was coordinated with the guidance of Dr Javed Anees -an interventional physiatrist and rehabilitation physician,
on the major diseases under the category of rare diseases, the methods for the effective recognition of these in the beginning stage and techniques to prevent these.Presentation: Dr Javed Anees
What is a Rare Disease?
There are various definitions for rare diseases. The most important one is the one given by WHO. WHO says “a disease can be called a rare disease if it occurs to one among one thousand people”. However, this is not a universally accepted definition. We can find that the number of diseases is enormous if we follow this particular
definition. According to the ICD 11, there are 5000 diseases which are considered as rare diseases. The number exceeds up to 8000 sometimes and this shall bring us to the conclusion that the rare diseases are the most normal ones. There are various diseases under the rare disease category. In Japan, rare disease is considered as something that occurs to one among fifty thousand people. There are no particular criteria set in our country. It is a health condition which comparatively does not affect others. These different diseases have affected 365 million people all around the country. There are 5000-8000 types of rare diseases. 80% of people are affected by the smallest percentage as in around 400-450 of these diseases.
Rare diseases affect 6-8 % of the population. The number of people affected with rare diseases in India is more than nine crores 80% of these diseases are genetic in nature. Moreover, that’s why it mainly affects children. Infections can also come under the category of rare diseases. There can be rare infections as well. Some parasites affecting humans can also be considered as rare disease. Rare disease is not always a genetic disease, but 80% among those affected genetically. All these 6000 haven’t reached in India.There are only 450 rare diseases seen in India, but, all those 450 diseases create huge responsibility for the public health. The lack of statistical i.e., epidemiological data on diseases is the reason for this. The lack of such data results in the ignorance regarding the details of particular diseases occurred to particular people. It becomes difficult to understand the consequences and the depth of the disease when such diseases affect people. We can
not plan properly in those conditions. Other issues are the normal ones that arise regarding research and development.