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Tuesday, January 28, 2020

Nerves of steel in lonely,unexplored world

The disease affects the myelin sheath that coats the nerves

Written by Pritha Chatterjee | New Delhi | Published: June 1, 2012 11:50:31 pm

At the age of 25,Deepak Gujral found that the arrival of summer would from now carry a whole new meaning. It would mean using the wheelchair and giving up many things,which would later include little pleasures such as lifting his toddler up in the air.

Heat was one of the first things Deepak learnt to dread after he was diagnosed with multiple sclerosis,an autoimmune disorder that affects the signalling system of the brain. Heat slows down transmission between nerves and this inhibits all motor activities,says Deepak,now 37,citing one of the many things he has learnt from the medical journals he subscribes to.

Today,12 years since his diagnosis — a period that has seen marriage and divorce,two job changes,and his participation in a trial at AIIMS for the single available oral drug for the disease — the MBA in finance considers himself more updated with developments in MS than “most doctors” are.

“MS is full of ironies,” he says. “You can’t help but fall into depression and get stressed due to the lifestyle changes the disease brings. But too much stress triggers attacks — you never know when your legs will give way,or when you’ll suddenly start seeing double.”

The unknowns

A number of such problems come with MS,a condition whose cause is yet to be established,and treatments for which are still being investigated in trials. “Patients are mostly young adults in the age group 20-30,who are starting out in life,planning to get married,earning well,and then,kaboom,everything changes,” says Dr M V Padma,professor of neurology at AIIMS.

The disease affects the myelin sheath that coats the nerves,with the body’s own immune system starting to attack it. Symptoms range from numbness,weakness in the limbs to sudden loss of balance,blurred vision and paralysis,leading to disability at the most advanced stage.

For Ankur,27,a sales executive diagnosed with MS barely a year ago,it brought a “slight memory loss”. “I don’t know if it’s psychological,but when I go into a room,I forget what I had entered for. When I leave home I worry,what if I forget the way home?” says Ankur. “I don’t know if it’s because of the disease or the drugs I take for it.”

Memory loss and behavioural changes,according to international studies,can be long-term impacts. Says Dr Manjari Tripathi of AIIMS,“There is an established decrease in brain mass,which could lead to these problems in the long term. But knowledge of MS is so limited — and the disease presents uniquely in every individual — that it is hard to explain a lot of things.”

About a dozen injectible “disease modifying drugs” in the broad category of interferons are available in India. The hunt for a permanent cure continues after the only oral drug in the international market,Fingolimod,was put under restricted use by the FDA in the US following the deaths of 11 patients after its intake.

“But then again,besides infection,which disease can be permanently cured?” Dr Padma says. The absence of a permanent treatment has led to what doctors describe as medical malpractices. As Deepak says,support groups and corporate hospitals tried to sell him two things — liberation therapy with stents implanted in the nerves,and stem cell therapy,both at exorbitant costs but with no proven medical basis. “I refused simply because of my strained finances. But these people sell hope and it’s hard to maintain your sanity when you are desperate,” Deepak says.

Ankur is still “contemplating” while his finances are already strained. “My medicine expenses for the last three months were Rs 80,000,which was rejected by my insurance company. They say I have a chronic disease,which cannot be covered. I can barely afford the drugs,whose price comes to Rs 5-7 lakh,and I don’t know how long I can keep working,” he says. “But if there is a new modality,I know my parents will jump at it.”

In the absence of a price control mechanism for drugs in India,and with little help from the insurance sector,many MS patients cannot afford to give up their jobs. Fighting the onset of disability,therefore,becomes the single-minded,desperate goal. “Often,when I meet fellow patients in support groups,those in the early stages walk up to me and ask,‘What should I do not to become like you? I don’t want to sit in a wheelchair’,” Deepak says.

With the disease presenting itself in a different way in every individual,even doctors have a hard time explaining why one patient needs a drug regimen different from what another one needs.

When a patient has an “attack”,it is not as visible as one in another neurological condition such as,say,epilepsy. In MS,it can be a simple stiffness in the legs,doubling of vision,or loss of consciousness in an extreme case.

“Since my diagnosis in 2000,I have had three attacks,” Deepak recalls. “The third one,which I call my mega attack,struck after my divorce in 2008. I was unconscious for an hour.”

Ankur missed what he later realised had been his first attack — the blurring of vision in one eye. He went to see the doctor when it happened the second time. “MS is a hidden disease. It lurks in the background until it suddenly presents itself in a whiff. And then it becomes your identity.”

On their own

Until a decade ago,MS was considered to be a white man’s disease,with cases rarely reported in Asian countries. Even when the MRI boom helped improve diagnosis rates,the WHO’s estimates in 2007 were only 50,000 patients in India out of an approximate 1.3 million worldwide.

These relatively small numbers,doctors say,lead to a sense of isolation in patients. Ankur tried to commit suicide twice before he found solace in a Facebook community of patients from all over the world. Yet he prefers to keep his condition a secret. “No one at work,not even my closest friends,knows about my diagnosis. I never told anyone because nobody could have understood,except another MS patient,” says Ankur,who wants to be identified only by his first name.

Even the language patients use to describe the way they feel,Ankur says,is beyond the understanding of “regular people”. “When I say I have an ache in my leg,or I feel fatigued,my family interprets it in regular ways. My mother tells me to sleep a bit more if I feel tired,or take a paracetamol for pain. But an MS patient immediately knows the kind of stiff pain and fatigue I am talking about,” Ankur struggles to explain.

Patients say the general lack of awareness has made it necessary for them,rather than their colleagues and even families,to adjust to their condition. Deepak had to give up a job as a marketing head because he could not be out on the field. He joined as the administrative head of another business in Gurgaon,but couldn’t keep up the travel from Vasant Kunj after the “mega attack” in 2008.

His wife knew about his condition when they married and he believes she decided on the divorce because of his dwindling finances. He misses his daughter,whom he has not seen in four years.

With no hereditary links associated with MS,nothing should have stopped a patient from getting married and having children. But Ankur says nothing could be farther from the truth.

The youngest of five siblings,he has given up plans to marry. “Doctors tell me I am fit enough to lead a normal married life and have children. But is it fair to expect someone to adjust to my condition?” He often has to deliberate over little decisions,such as travelling to Delhi for World MS Day on Wednesday.

“I had plans to study further,I loved playing cricket,I planned to fall in love,but I had to spend the last year telling myself I might just have to reconsider my life,” he says. “Now that I have,I am enjoying myself.”

What it means

Multiple sclerosis: MS is an autoimmune disorder where the body’s own immune system attacks itself. One of the first areas to get affected is the myelin sheath,the layer covering the nerves,which hampers the neurological signalling system from the brain to nerves around the body.

What happens: The symptoms vary from person to person and can include numbness,weakness in the limbs,sudden loss of balance,blurred vision,paralysis,and disability at the most advanced stage.

Why it happens: The cause is not yet clear. Researchers associate it with environmental and lifestyle factors like heat and stress.

Treatment: No permanent cure yet,several trials under way. Patients are treated with a group of injections known as interferons,also called “disease-modifying drugs”.

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