That rash may just be kawasaki

Sixteen-year-old Jett Travolta’s untimely death brought a rare disease to the limelight. Though results of the autopsy were not made public, his battle with the little-known Kawasaki disease has been widely discussed.

The disease, which affects the skin, mouth and lymph nodes, is usually found in children below the age of five. Named after Dr Tomisaku Kawasaki, the Japanese doctor who first discovered it in 1967, the disease occurs in Japan more than anywhere else.

However, its incidence has been on the rise worldwide, including India. In 1995, Dr Bharat Dalvi, paediatric cardiologist at Breach Candy and Nanavati hospitals, met his first patient with Kawasaki disease.

“In the following years, two or three more children came to me with the disease’s complications. But last year I saw eight patients with the disease.”

Marked by fever, skin rash, a ‘strawberry tongue’, cracked lips, dry conjunctivitis and swollen lymph nodes, Kawasaki disease has seemingly telltale signs. Yet, experts admit, misdiagnosis is common because it has been a rare condition until recently.

“Often, Kawasaki’s symptoms are similar to those of measles. Parents and even a few doctors dismiss it as measles, waiting for the fever to subside,” says Dr Indu Khosla, pulmonary paediatrician.

The cause of the disease is unknown. This month, Australian researchers identified genes responsible for it, and this may help in diagnosis too. “Timely diagnosis is vital in the treatment of Kawasaki, since delay causes cardiac complications in children,” says Dr Khosla.

Savio D’Souza learned this the hard way. He recounts his daughter Jane’s battle with the disease in 2006. The six-month-old child showed symptoms of Kawasaki disease. But his paediatrician failed to diagnose it till the ninth day — a delay which allowed the disease to spread. Jane developed an aneurysm of the coronary artery (inflammation that may lead to a clot and heart attack).

“Later, when we learnt that cardiac complications after Kawasaki disease are avoidable, I was devastated,” says D’Souza. “If only my daughter had received appropriate treatment in time after the onset of fever…”

Jane’s fever didn’t subside for five days and the subsequent blood report revealed an infection. D’Souza relives the horror of watching heavy doses of antibiotics being shot into his daughter’s arm with no respite. Three more days elapsed before the doctor suggested they approach another expert, who diagnosed Kawasaki disease.

“It was a nightmare I wish no parent experiences. Jane was in tears throughout,” says D’Souza. Pointing to her arms and feet, he says there isn’t a patch where syringes weren’t inserted — most of which could have been avoided.

Treatment of Kawasaki disease involves administration of intravenous gamma-globulin (a plasma protein that boosts the immune response). Subsequent chances of cardiac complications are almost nil. Jane too was given the expensive injections (costing Rs55,000), but a lot of damage had already been done by then.

Today, she still goes for 2D echo heart tests every two months and takes regular doses of aspirin.

“Kawasaki disease can cripple your family. My wife already suffers from kidney problems and at times, it is difficult to give our elder daughter as much attention,” says D’Souza. “There were moments of helplessness during Jane’s treatment when we wondered if it would have been better had she succumbed…” However, today D’Souza is glad he held on.

Awareness about the disease is low, even among doctors. Ironically, the disease demands prompt identification and treatment. So it is important for experts to watch out for uncommon symptoms.

“Your doctor should be able to distinguish between a measles rash (common around the neck region) and the one due to Kawasaki (the rash is not restricted to one area). Irritability in children and dryness of eyes are also a giveaway,” says Dr Khosla.

Given the fog surrounding Kawasaki disease, Reena Kanuga can consider herself among the more fortunate. Last April, her five-year-old son Sami showed Kawasaki’s symptoms and received prompt attention. Now at 6, he is a healthy child.

“The news that your toddler is so close to being crippled by a heart condition can be devastating for a single parent like me,” says Kanuga. “The doctor allayed my fears and assured me that a cardiac complication would not arise after the treatment. Her confidence boosted my morale and we pulled through it all.”

Reliving days spent in the hospital where her son was nicknamed ‘Kawasaki’, Kanuga says, “You need a ray of hope — in the form of an understanding doctor or neighbours who bring you reams of research papers. You can’t fight a little-known enemy like Kawasaki alone…”