Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

The Challenge

Rare Unacknowledged Disease

People with Joint Hypermobility Syndrome spend their lives in considerable physical and mental pain, without a diagnosis, and without validation from others about their medical condition. They are told repeatedly, "It is all in your head." There are other diseases like this, for which till a few years ago, the medical knowledge was limited. Lyme disease, chronic fatigue syndrome, irritable bowel syndrome and many other diseases including some connective tissue diseases are such diseases where the person often spends his life facing a medical condition with no support or validation from doctors and society. The only diagnosis people with JHS often get from others is "lazy" or "doctor shoppers". They do not get the help and relief they seek from doctors, and the understanding and support they deserve from the society.

The light of knowledge 

There are a handful of countries where a few medical researchers have been doing excellent and serious research on hypermobility - and their publications, advocacy and endeavors in making the doctors and the people aware of this condition has changed the social and medical scenario. Not a change big enough to change the whole world, but big enough to change the lives of many people in those countries. It is like a candle that can light a few more candles, and those candles can light a progressively larger number of candles. A look at the medical research publications, clinical books, hospital websites and informative websites by doctors, support organizations and forums, and personal blogs over the last ten years makes this trend very apparent.

The Indian Scene

Such a scenario as presently seen in the United Kingdom for example, in context of diagnosis and management of JHS, is a long way down the road in India. In fact, the diagnosis of this condition is rare enough to be newsworthy. There are just a handful of studies done on JHS in India, most of them are studies of prevalence in school children or some specific groups. Most Indian doctors have neither heard of JHS, nor do they look for joint hypermobility in their patients. Many of the JHS patients with severe joint symptoms might be getting treatment meant for autoimmune joint diseases due to wrong diagnoses.

Let us close our eyes to the Indian studies which have found a high incidence of joint hypermobility (JHM) in Indian children and some other groups [1]. Let us ignore the statistics which experts bicker about. Just close your eyes and calculate what is 0.1% of our population. Even if 10% people of the Indian population have JHM, that translates into 100 million people. And even if 1% of those JHM people have JHS, then that makes more than a million people who are in pain, are prone to injury, and who can be helped with proper diagnosis and management.

The eyes do not see what the mind does not know.

 There are three things I would like to see change in the Indian JHS/H-EDS scenario:
  1. Medical Community: The doctors - orthopedists and general physicians who see most of these patients need to be aware of the recent advances in the knowledge on hypermobility and know more about these conditions and how they manifest. Physiotherapy regimes, pain management strategies, and other supportive therapies need to be developed to offer relief to the millions affected by JHS.
  2. Patients: The people facing these health problems need to know the existence of such a medical condition. They deserve to be guided to proper management, physiotherapy and other supportive resources. They also should know that the condition is heritable, and how they can help their children early on if they have inherited it.
  3. Society: People not afflicted with the conditions need to understand what it means to have this syndrome. How does it affect the life of a person? What are the disabilities, constraints and associated health problems or symptoms faced by the people with these conditions? How they can help a friend, family member or a colleague with this condition?

[1] Hasija RP, Khubchandani RP, Shenoi S: Joint hypermobility in Indian children, Clin Exp Rheumatol 26(1):146–150, 2008