|Feb 7, 2000|
Families come together to unitedly confront a rare affliction.
By Ramesh Vinayak
Harbir Singh was a broken man. On a November afternoon last year, as he listlessly leafed through some medical literature at a stall at pgimer, Chandigarh, he was burdened by the knowledge that his 14-month-old son Gursehaj had been diagnosed with primary immune deficiency (PID). A rare affliction in which the immune system stops producing disease-fighting antibodies, its lifelong treatment would be exorbitant. It had been tough enough to identify the disease: Gursehaj had been treated for asthma, tuberculosis, pneumonia, even HIV because doctors couldn't understand why a healthy baby should suddenly suffer a swarm of infections.
At the stall Singh met Pawan Kumar and L.C. Kapse. The duo told him about their sons, six-year-old Vicky Kumar and five-year-old Akarsh Kapse, both victims of Bruton's Syndrome, a common form of PID. Of how they couldn't eat sweets from roadside vends, how they could never play rough games with their friends or step out in the rain. The two youngsters risked diarrhoea for weeks -- even months -- if they ate unhygienic food. Minor scratches took weeks to heal. And even a slight exposure to rain could lead to pneumonia.
Singh took heart when he heard that the two little boys were leading normal lives, save for a monthly visit to the hospital for an infusion of intravenous immunoglobulin (IVig), a cocktail of antibodies prepared from blood plasma. It was expensive at Rs 5,700 per dose, but it allowed them to live and the fathers were grateful. "It was almost like a rebirth," says Kapse. "I was prepared for my son's burial."
For Singh and fellow sufferers, Kumar and Kapse and their Society for Providing Relief for Primary Immuno-Deficiency Diseases (soprepidd) has become a source of sorely needed comfort. "Collective trauma has become collective hope," says Singh. The Chandigarh-based society comprises eight families, a few donors and some paediatricians. Doctors who identify PID patients refer them to soprepidd for guidance on how to cope with the affliction and the crippling financial burden. The society is striving to establish a database on PID patients in India, foster support groups in other regions, organise donations and liaise with overseas support groups.
Caused by a freak genetic mutation, PID mostly affects males while females are carriers. Problems surface only after the child is six months old when it outgrows the passive immunity gained from the mother. PID is not only rare, it is difficult to diagnose too. Only four medical centres in India -- at Chandigarh, Vellore, Delhi and Lucknow -- have the facilities to detect the deficiencies. In the past six years, just a hundred-odd cases of PID have been diagnosed in the country.
It was the one man's struggle that made soprepidd possible. For Vicky's family, the prognosis had been frightening. With a monthly salary of Rs 4,500 his father could not afford the monthly infusions. Desperate for money, Pawan Kumar approached several voluntary organisations in India in vain. Hope came from an unexpected quarter. In a reply to Pawan Kumar's plea, the New Zealand-based International Patient Organisation for Primary Immuno-Deficiencies (IPOPI) donated 10 IVig vials for Vicky's treatment. In October 1998, IPOPI invited Pawan Kumar to a conference in Greece. There he learned how parents of PID patients coped with the disease -- emotionally and financially. He came back resolved to set up a support group for PID patients. Last year, soprepidd was formed to spread awareness about the disorder, raise resources and fund the treatment of PID patients. When the Red Cross Society of Finland sent him a personal gift of 1,000 IVig vials worth Rs 12 lakh, he kept aside just 120 vials for Vicky's treatment and donated the rest to PGIMER.
Doctors at APC were hoping someone would organise a support group. "It's foolhardy to expect the government to finance such an expensive therapy," says Dr Surjit Singh, a paediatrician at PGIMER. Each PID child requires a Rs 10-lakh deposit to generate interest that will fund his lifelong treatment. Doctors therefore see soprepidd as an "exciting beginning" which will show the way to others who, without diagnosis and treatment, live on a wing and a prayer.