November 1, 2009

Multiple Sclerosis (MS) is a disease that has left the medical fraternity the world over grappling in the dark trying to know its causes and a possible cure.  Most people might not have heard about this crippling disease due to lack of awareness and also due to a kind of stigma attached to it for reasons not known. It is neither a mental disease nor is it contagious. However, it cannot be prevented or cured.  This disease has crippled the lives of thousands of people in their productive years as it mainly affects those in the age group of 20 and 50.  Hence the disease is referred to as the young adult crippler.  
 
The disease is common in the west and is known as “white man’s disease”.  However, it is not confined to the white skinned people alone.  In India, an increasing number of people are afflicted and diagnosed with the disease and in coastal Karnataka too there are many people who are afflict of this rare disease. With more and more people getting affected by this disease the need to open the Mangalore chapter of MSSI was felt and in March this year Mangalore Chapter of Multiple Sclerosis Society of India (MSSI) was opened at Justice K S Hegde Hospital, Deralakatte, to cater to the needs of MS patients.   It is the result of the initiative taken by Dr Lekha Pandit, Professor of Neurology and Director of Advanced Neurology Research Unit at K S Hegde Medical Academy. Prof Shantharam Shetty is the President of Mangalore chapter of MSSI.  The treatment of MS patients is subsidized by 1/3 at K S Hegde Hospital, which is a great boon for MS patients.      

Dr Lekha Pandit

So far the Mangalore chapter of MSSI has about 40 registered members in the form of patients or their family members and the society has been doing yeoman’s service to respond to their needs.  The Medical Council of India has made MRI mandatory in all teaching hospitals and with little more awareness about the disease an increasing number of MS cases are being detected and diagnosed in our country. There are numerous other patients including some medical practitioners, who are not forthcoming to register themselves at the MSSI Mangalore Chapter, for the fear of letting the secret out. Dr Lekha Pandit says “there is some stigma attached to the disease and people do not openly admit to having the disease.  Sometimes there is improper diagnosis and the cases come to the notice in progressive stages”.   

MSSI works towards minimizing the devastating effects of the disease on the individuals as well as their families and is actively campaigning to spread awareness.  Since the crippler disease starts in young adulthood and is not a life threatening disease (it does not kill the patient immediately) the family along with the patients suffers physically, emotionally and financially.  MSSI assists them to cope and face the challenges of living with the disease.   

Dr Lekha Pandit feels “lack of awareness among the common people has also been a major cause in properly diagnosing the disease among the people in the rural area.  It is difficult to know how many people in this coastal area have this disease for us to render whatever possible help we can.  The society provides subsidized medical services, physiotherapy, diet guidance, equipments like wheelchairs, walkers, crutches and counseling.  We also organize group meetings to give moral & emotional support for patients who feel better interacting with likeminded people and don’t get into depression”. 

What is MS?

Multiple Sclerosis is a chronic unpredictable disease of the central nervous system (the brain, optic nerves and spinal cord).  It is an auto immune disorder in which the individual’s immune system attacks the person’s central nervous system involving brain and spinal cord leading to demyelination.  The disease onset usually occurs in young adults and is more common in females than males.  Demyelination results in the nerve cells in the brain and spinal cord loosing their ability to communicate with each other. 

Consequently the brain is unable to transmit clear messages resulting in loss of body balance, blurred vision, numbness, slurred speech, fatigue,  problems with memory and concentration, muscle weakness etc,.  It is called sclerosis because the disease causes tissues to harden and leaves scars in the damaged areas of the brain and the spinal cord.  

MS is not a fatal disease as it is not life threatening in the sense that it does not kill the person.  On the contrary it cripples the person to an extent that within a couple of years the patient is completely bedridden suffering from multiple organ failures.  It is not just the patient but the entire family suffers along with the patient.  While some are lucky to have remissions and relapses and are able to pull on life with slight disability majority of the patients suffer from chronic progressive attacks and are crippled. 

While the exact causes of the disease are yet to be ascertained Dr Lekha Pandit who has done extensive research and has worked with MS patients in UK and India says “while it is difficult to explain the exact causes of the disease genetics, environment susceptibility, infections and some unknown factors may trigger the disease”. New research shows that hemodynamic disorders also could be the cause for certain kinds of MS. 

Lack of Support System

Though there is no cure for the disease treatment includes decreasing the rate and severity of relapses, reducing the number of lesions and also delaying the progression of the disease. While the disease is common in European countries where the country’s national insurance system takes care of the patients the scenario is dismal in India says Dr Pandit.  “The disease has no permanent cure and can be controlled through steroids in cases of relapses so that the patient gets immediate relief. Most of the drugs used to treat the disease are imported and are priced on the higher end. 

Now there is an injection which controls the disease to a great extent called Beta Interferone costing Rs. 4000/- per doze is used to treat the patients which has to be administered three times a week and the cost runs to Rs. 12,000 per week. Less than 1% of the known cases are able to use this injection, a burden even the upper middle class family cannot easily afford this treatment to keep the disease under control”, Dr Pandit declares.  Countries like Jordan and Iran have prepared their own molecules which are made available to the patients at subsidized rates.  Sadly in India even insurance companies will not renew the premium once they come to know the patient has MS, she avers.  

Fortunately some drug companies have been doing extensive research and those patients who cannot afford Beta Interferone are volunteering to be on clinical trial for these drugs as they have no other choice but to hope against hope that some medicine might work wonders for them.  

Though Multiple Sclerosis affects women almost twice as frequently as men in India the ratio is the same on an average due to the bias in the treatment given to women.  Facilities like advanced image technique such as MRI are helpful in identifying the disease which shows that the number of MS people is on the rise in India.  Due to density of population people suffering from the disease may be higher in India as compared to the west.  

Wrong diagnosis or delay in timely treatment is another major cause resulting in the progression of the disease. Dr Lekha Pandit says “symptoms as simple as tingling may indicate the onset of the disease.  But most people neglect such initial symptoms”.  The disease required a specialist to diagnose and therefore a vast majority of the rural areas remain outside the bracket of treatment.  Dr Lekha requests all neurologists in the districts of Mangalore and Udupi to get in touch with MSSI Mangalore chapter whenever they see persons with symptoms of MS.  This helps us to document the patient, do MRI scan and keep them under follow up surveillance.  

Dr Lekha Pandit Honoured   

Dr Lekha Pandit, Professor of Neurology and Director of Centre for Advanced Neurological Research as K S Hegde Medical College, Deralakatte  has been honoured with the 2009 Jacqueline du Pre grant from the Multiple Sclerosis International Federation (MSIF) based in UK.  She is the first medical practitioner from India to be the recipient of this prestigious honour. This grant named after an internationally acclaimed musician who succumbed to MS at a young age enables selected scientists working on Multiple Sclerosis from all over the world to work at a research centre of their choice for up to 6 months.   She will be leaving from UK in January 2010 for a period of six months as she has been accepted as a visiting fellow of the Department of Neurology, Addenbrooke Hospital, Cambridge in UK.  She will be working with Dr Stephen Sawcer on the role of HLA in Indian M S (Haplotype tagged SNP analysis of the HLA system.  The grant is awarded based on their previous work on MS, their research interest and publications.  

Dr Lekha’s interest in MS began in KMC Manipal when she was in the hunt for a topic to present a paper in the first national conference on Neurology held in Manipal in the 90’s.  She presented her paper on MS in coastal Karnataka and since then has been carrying on her research relentlessly on this subject.   She worked among M S patients in UK and worked under Dr David Bates, who is said to be an authority on MS.  Lekha has many publications to her credit on the subject. 

Pursuing her research interest in MS Dr Lekha has entered into collaboration with Prof Jun-ichi Kira, Head of Neurological Institute, Graduate School of Medical Science, Kyushu University in Japan to make a detailed study on the role of Angi-aquaporin antibody in the causation of inflammatory demyelinating disorder in India. 

Dr Lekha is hopeful that the Mangalore chapter of MSSI would be able to render whatever little help it can for MS patients and their family members.  

Dr Lekha Pandit can be contacted on email id – panditmng@gmail.com