Maheswari Narasimhan was in her 30s when deteriorating health forced her to quit her job. Then a sole breadwinner of her family, she worked at a senior level in a company that exported yarn.
Diagnosed with multiple sclerosis (MS) at the age of 32, she first complained of blurring vision which quickly progressed to her losing feeling below her waist. It made everything harder for her – seeing the colour of the yarn at work, putting on a saree, or even walking with slippers.
“There was no awareness and no one in my family knew of it. When my mother got to know what multiple sclerosis was, she got very scared as I was the only breadwinner for my daughter, myself, and parents,” said Narasimhan, who is now 56 and works as a volunteer.
In the 24 years since Narasimhan’s diagnosis, our understanding of MS has grown significantly. Diagnosing the condition is easier and managing it in most cases is possible. Yet, a lack of recognition of the symptoms prevents many from getting diagnosed early.
Take for instance the case of Divya (last name withheld), a 25-year-old Chennai resident whose tryst with MS began during the pandemic. In January 2020, she began losing vision in her left eye. Working at an IT company, she was initially diagnosed with “stress” related to long hours in front of a computer screen.
But in the months that followed, things took a turn for the worse as she began struggling to walk. Only then did the doctors think it necessary to do an MRI scan, confirming that she indeed was suffering from MS.
“I lost my vision, and six months later, they tell me that I have this very life-altering disease that has no cure,” said Divya, who lost her job before she was diagnosed with MS. “I felt alone. No one could understand what was happening. As far as I knew, everybody thought I was just lazy.”
Divya, who spoke to Happiest Health at the side-lines of an event organised by the Multiple Sclerosis Society of India’s (MSSI) Chennai unit, said she has only now been able to break out of depression and talk about her condition. What helped was intensive therapy and being able to surround herself with good people.
Crippling young adults
MS is an autoimmune, inflammatory disorder in which the body’s immune cells go rogue and begin attacking the myelin sheath of neurons in the brain and spinal cord. Just like stripping off the plastic insulators of electrical wires, this causes chaos, leading to mobility issues, numbness, vision loss and fatigue.
It’s almost impossible to predict who will develop MS as the condition is believed to be caused due to a mix of genetic as well as environmental factors. The severity of the symptoms also varies widely – while some people might lose the ability to walk, others may only suffer from minor symptoms that don’t re-occur for several years.
But over time, the condition can cause permanent damage and deterioration of nerves.
Initially thought to be a condition more prevalent in colder climates, new data is showing that this might not be the case. Even given the non-availability of data on people with MS in India, a rough number crunch by MSSI estimates around 200,000 people have the condition in the country.
Impact on women
Primarily affecting young adults in the age group of 20-40 age group, women are more prone to developing the condition than men (as is often the case with other autoimmune conditions such as lupus). “We find that 80% of those with MS are female,” says Dr Netravathi M, Additional Professor, Department of Neurology at the National Institute of Mental Health and Neurosciences (NIMHANS) in Bengaluru.
Having seen several cases of MS, Dr Netravathi says the condition often presents hurdles in the most crucial phase of one’s life. Especially for women, MS usually comes at an age when they are striving to build their careers and start families. She says 90% of the people she has seen with MS end up not getting married. “The condition leads to a lot of expenses for medications and burden on the caregiver,” she explains.
If detected early, MS can be managed, allowing the afflicted to lead largely healthy lives. Even so, social stigma rears its ugly head.
Stigma in marriage
Ann Gonsalvez, honorary secretary of the Chennai chapter of MSSI, says she has seen it all. Families of men turn down proposals for marriage of women with MS. Their worry is not the cost of medicine, but that women with MS will not be able to bear children. The truth, however, is that MS, if properly managed, need not result in complications in conception.
“There’s a lot of stigma attached to MS particularly for young women of marriageable age. Many of them hide the condition, but when there is a relapse, it comes to the fore. It then becomes an issue of trust and we have seen many relationships end up in divorce,” says Gonsalvez, a banker turned social worker.
She adds that the MSSI helps such couples with marriage counselling to get them back together; however, not everyone is understanding.
Gonsalvez now spends a lot of time counselling those with MS, their partners and even their families on the condition. Ensuring one receives the proper treatment and follows the recommended dietary and lifestyle regimes can speed up recovery from attacks and slow down the condition’s progression.
In countries like the US and UK, MS is considered like any other chronic condition, points out Dr Venkatraman Karthikeayan, the first Indian to receive the clinical training fellowship award from the European Committee for Treatment and Research in Multiple Sclerosis. Dr Karthikeayan now practises in Chennai.
Gonsalvez says the biggest hurdle she faces is the lack of awareness among people about MS, and the stigma that a woman would pass on the condition to her child.
Doctors say women with MS almost always have no issues in conceiving children. The only issue that could crop up is when an individual is suffering from weakness in the limbs and pelvis, which could cause complications in natural birth. But even here, exercise and proper management of MS can reduce risks.
“A relapse of MS may occur in the first trimester, can sometimes occur during the second trimester, but is almost unknown to occur in the third trimester. However, if one isn’t careful, it can come back strongly in the postpartum period,” says Dr Karthikeayan.
However, he says that data shows that breastfeeding for six months after birth brings down the risk of an MS relapse significantly during this period. “Science doesn’t have a clue as to why this happens, but this is what the data shows,” he says.
Dr Netravathi explains that the reason for this could be that post the nine-month pregnancy period, the mother’s body witnesses a lot of sudden hormonal changes that could trigger the worsening of MS symptoms. However, she too concurs that it is possible to manage the condition during pregnancy.
Expensive medicines and integrated treatments
Yet, the lack of awareness on the condition and its treatments often means women with MS struggle through childbirth. The condition is also extremely expensive to manage, a concern that has been fought by activists such as Gonsalvez to ensure that all members of MSSI get relief from the government under the Disabilities Act.
Disease modifying therapies are the most popular class of drugs to manage MS. They are taken orally, as an injection or through transfusion, but their cost is prohibitive, especially for individuals from economically weaker sections of society.
In India, a course of 12 injections for disease-modifying therapies costs `30,000. There is a better therapy that just requires a single injection, but that costs `84,000. A new long-acting drug imported from the US and other overseas markets is making its way to India, but it costs `12 lakh.
Even for those working in well-paying white-collar jobs, these treatments are out of reach. The husband of an individual with MS told Happiest Health that acquiring such treatments is hard on the family’s pocket, despite both of them having full-time jobs. However, they are planning to go ahead with it considering that it has been seen to be effective in managing MS.
But medication is only one part of keeping MS at bay.
Dr Karthikeayan says that in his regime, medication makes up just 20% of the treatment. “The rest is nonpharmacologic interventions. A combination of aerobic and anaerobic exercises, which also includes resistance exercises, apart from yoga, Pilates, and Tai Chi is extremely helpful,” he adds.
Moreover, those with MS require psychological, social and other help, which has been found to boost treatment outcomes. However, doctors warn that holistic methods should only be adopted as co-therapies, as medication is the only known way to properly manage the condition right now.
A friendly helping hand
For Kalaivani, who was diagnosed with MS during her second year of B.Com, a helping hand and some encouragement to do new things proved effective treatments. When she began to work at MSSI as a patient coordinator, she realised that apart from helping people manage the condition medically, she was most effective when speaking to others with the condition. “I tell them not to worry and do things that take their mind off (depressing) things. It is important to keep those with MS engaged, so I help them and encourage them when they tell me they want to do something new,” Kalaivani says.
But the niggling feeling that she does not have it as easy as others without the condition eats away at her sometimes. For the 32-year-old, seeing her friends getting married is a reminder of this. Yet she understands the reality, as she often must help make partners of MS patients understand the nuances of the condition.
However, this has not stopped her from dreaming. “I want to buy a car and build a house for myself. They are small dreams, nothing big, but just like others even I have them,” she says.
This article was first published in the February 2023 issue of the Happiest Health magazine. To read more such stories subscribe – Happiest Health Magazine.
