Living with the Wolf

‘She had a weird fever pattern," says Radhakrishna, recalling the events that unfolded over a couple of days in June of 2007.

His wife, was severely ill, most tests to diagnose malaria, dengue and the like came back negative. That's when the doctors suggested a lupus test.

"It is one solid test that nails down lupus. There are about 13 different symptoms used to identify the disease, if at least four are seen, then the person has lupus," he said.

Speaking of the four symptoms that handed back a positive diagnosis for his wife, he says, "Drastic hair loss — she had knee length hair, rashes all over the body that would appear and disappear and we thought it was some sort of allergy, she had severe pain in her ankles, joints, and hands, and swelling."

Lupus is an autoimmune disease where one's immune system works against the body's own tissue. Antibodies that usually fight against infection causing bacteria and viruses, in lupus, start 'attacking' the body's healthy cells.

However, it is often difficult to diagnose, "One reason why it is so difficult, is because lupus has so many different manifestations — from pain in the joints to hair loss. It can affect any part of the body — brain, heart, lungs, kidney, skin and blood," says Dr BG Dharmanand, HoD, department of Rheumatology. The city is only now beginning to understand and manage the disease, as Dr Dharmanand points out, "A decade ago, awareness within the city's medical community on lupus was low, today, relatively, it has grown." Earlier, cases were referred to Vellore, but now the city is geared up to manage the disease.

As rare as the disease may sound, doctors say it isn't so. In fact, according to doctors, although the prevalence of lupus is high among Chinese, Indians come a close second, on par with Africans and Hispanics.

Dr Dharmanand says, "Due to the various manifestations, often patients may go to a nephrologist, dermatologist, etc, but rarely would one visit a rheumatologist."

Lupus is more common in women than men. In fact, nearly 90 per cent of those diagnosed with Lupus are women. One in 2,000 women gets affected by Lupus, Dr Dharmanand says. Explaining why, "It could be due to the hormonal changes." Drawing a comparison, he said that while men are more prone to heart attacks, women are prone to lupus.

There are no exact causes yet identified and the only way to deal with lupus is to manage it. However, what is known is that there are three types of lupus.

These are — Systemic lupus erythematosus (SLE), it can affect multiple organs in the body. It is difficult to diagnose as symptoms can be similar to those present in other illnesses. For instance, if there is swelling in the joints one may mistake it to be some form of arthritis.

Then there is Cutaneous (or skin) lupus, as the name suggests it mostly affects the skin and can be identified by a rash on the body — face, scalp, legs or arms. Sometimes the rash can leave scars. Lastly, there is Drug-induced lupus, and occurs due to reactions to certain specific medications.

Dr Dharmanand says, "Apart from infections that are curable, most diseases are managed." While research to find the exact cause of lupus is on-going, patients have a higher chance of survival than before. He points out that before steroids, 80 per cent would die within five years, but today, almost 90 per cent have a chance of surviving 10 years and 75 to 80% have a chance of surviving 20 years.

Radhakrishna’s wife suffers from SLE, she was diagnosed in 2007, just seven months after she was married. "We visited the Maldives during the summer and the doctors feel that could have been the 'environmental trigger'," says Radhakrishna .

Lupus is a rheumatic condition that always has an environmental trigger, however, doctors say that it is difficult to pin-point what specifically triggers it. In his wife’s case the doctors felt it could have been the heat of summer. "The first major 'flare up' was bad and the physician we consulted, who had experience in dealing with such cases, put her on steroids immediately," he says.

She was on steroids for about 11 months, the dosage — high at the beginning and gradually tapered.

Medication often has side effects, and his wife’s case was no different. "Her muscles grew weak, when she would squat she wouldn't be able to get up, she started to go bald, and developed ulcers in mouth and throat," he says. Baffled by the effects, the couple consulted an immunologist, who advised them that, "steroids can have strong side effects", he also shifted her from steroids-only to a combination of immuno-suppressants and steroid medication.

As the body transforms — due to the disease as well as medication, "low self-esteem and depression are common," say doctors.

Cosmetic changes do take a toll on the person's pysche, Dr Dharmanand says, "In our society a lot of emphasis is put on looks and since the disease affects women, even girls — strong medication does make them puffy and plump, and they may develop facial hair. Such changes often cause discomfort among women."

Lupus can affect women as young as 13 and as old as 45, during the reproductive period, say doctors. And while there is no confirmed evidence that it is a genetic disease, there are chances of families being at high risk. "If a person has lupus, the family has a 10 to 15Z% chance of developing lupus. There is a two per cent chance that it may be passed to a child," says Dr Dharmanand.

De-bunking the myth that affected women may become sterile, he says, "The disease affects their immune system, they can be at high risk but if planned well, they can have a normal pregnancy." Usually, 'flare ups' are common during pregnancy, hence, before a woman plans her pregnancy the disease should have been dormant for atleast six months.

"It did affect our personal life, the doctors advised that we manage the disease, it has been two years and the doctor has said we can plan a family now," says Radhakrishna. Socially it affects and alters the lives of the patients as one doctor said, "In our society a man may suffer from a disease but that does not affect his marriage prospects such as it affects a woman's." Many often either hide the condition or bear the social brunt of it. It even caused turmoil in Radhakrishna’s married life. "While we stayed by each other’s side, within our families there was a lot of finger pointing," says Radhakrishna. Fortunately for the couple, they had a good support system of friends who saw them through the stressful time. "There was a lot of blaming — my parents felt I hid this from them, while her parents felt she got the disease from me."
Two years on, the families are now closer than before, "There was a lot of shock and lack of awareness  that caused a lot of emotional strain." Timely medical intervention helped iron out the creases in relations, "The doctor in Hyderabad, where my wife was being treated called on our parents, separately, and told them how it wasn't anyone's fault and how this condition could affect anyone, the role of an environmental trigger and also how medication can help manage the disease."

Women tend to gain weight and hence, doctors often advise patients to have a diet rich in anti-oxidants (these are food that are rich in Vitamin A, C and E. Veggies like carrots, tomato, spinach and fruits like apple, orange, papaya, etc), low on processed foods like cheese, cakes, etc. Also, doctors point out that ‘skin lupus’ is more common, hence, one basic advice they have "is for patients to wear sun-screen, even while indoors.

Exposure to the sun can aggravate the situation and also cause flare ups," says Dr Dharamanand.

Social stigma is high as the appearance tends to change, but strong family support ensures a healthy recovery and helps manage the disease better. "You can lead a normal life," assures Dr Dharamanand, and well, if you wouldn't believe a doctor, here's what Radhakrishna says, "We have had our share of ups and downs, that's there in every marriage, but we just have to be more careful, it isn't easy, but then what is these days."