Two years ago, when 10-year-old Ginshamol James fell sick, her family took her to a private hospital in Coimbatore.
“They gave her an injection but she had a bad reaction to it. One side of her body became completely paralysed,” said her father Austin James.
The worried family then took her to the government hospital in Coimbatore, where she was diagnosed with systemic lupus erythematosus, an incurable auto-immune disease.
Eventually, she was moved to the Rajiv Gandhi Government General Hospital (GH) in Chennai.
“When Ginshamol came to us, the disease had affected her skin and her blood vessels were involved too. She had high-grade fever, had lost one finger to gangrene and was bedridden with severe arthritis,” said S. Rajeshwari, head of the rheumatology department at GH.
After nearly a month of treatment, Ginshamol is now walking, talking and laughing again. “But she will have to undergo lifelong treatment,” said Dr. Rajeshwari.
On Saturday, GH marked World Lupus Day to raise awareness about the disease. “This is a multi-system disorder that affects the connective tissue. It does not spare any organ in the body — from head to toe, everything can be affected,” said Dr. Rajeshwari.
She explained that the disease usually manifested as a butterfly rash on the face, but there could be immense hair loss, ulcers in the mouth, depression, memory loss as well as other indications.
“It affects more women than men, in a ratio of 12:1. Mostly, women of child-bearing age are affected, many of whom have just finished school or are newly married. Children and the elderly can also be affected,” she said.
There are a number of causes — mostly genetic and environmental factors — of the disease. However, it can be managed: the survival rate with treatment for five years is 95 per cent and for 10 years is 80 per cent, said Dr. Rajeshwari.
GH holds a clinic for the disease every Saturday and provides drugs too. “Every year, we see around 600 patients who come from across the State and other parts of the country too,” said Dr. Rajeshwari, adding, an estimated 2,000 persons were affected in Tamil Nadu every year.
“Many of them cannot afford the treatment as it very expensive in the private healthcare system. Some young affected women are abandoned by their husbands while others slip into depression. Some commit suicide,” she said, adding, treatment included group counselling sessions.
A camp, an exhibition, a quiz and an interactive session with patients and their families were also held on Saturday.