Starting anew - Creating awareness
Pelvic tuberculosis is a less known disease that affects only women and results in infertility. US based health activist Jigna Rao elaborates to TWF correspondent Shoma A. Chatterji on this ailment from her own life experience
About four years back Jigna Rao's life fell apart as she was diagnosed with pelvic tuberculosis (TB) that ended her hope of ever becoming a mother. She lives in the US and is now cured of the disease. Since then, she has reinvented and redefined her life by working towards raising awareness about TB- even within the medical fraternity.
Rao shared her experience at the recently concluded 43rd World Conference on Lung Health and Tuberculosis held in Kuala Lumpur,. Rao's story goes back to 2006 when she failed to conceive after many frustrating attempts. She and her husband Prakash decided to consult an infertility specialist who put her on an infertility treatment plan without conducting other associated tests. The nine months of treatment were traumatic because it brought along hormonal changes following painful procedure but without results. "Then I decided to take a second opinion where the specialist said perhaps exploratory surgery would take care of the problem. But I could gauge from her attitude that something was worrying her though she could not put a finger on it," Rao recalls. Another nine months of investigative exploratory surgery and treatment followed. Then she was told she was suffering from pelvic TB. When she came out of her foggy state, it was only to hear that both her fallopian tubes had to be removed and it dawned on her that she could never have baby. "For me, it was like hearing my death sentence."
Rao was familiar with pulmonary TB back in India but had never heard of pelvic TB. Nor did it ever occur to her to connect TB with the affluent and the wealthy because, "In India, we understood that only the poor suffered from TB," Rao recalls. What is worse, in most cases of pelvic TB, which affects women alone, could go undetected for as long as 10 to 20 years. It produces no symptoms and as it advances, it affects the internal organs including the reproductive system. Had Rao not changed her infertility specialist or insisted on investigative testing, her case would have gone on undiagnosed and it would have been disastrous. "When my medical insurance ran out, I would have suffered from gradual decay of other organs that could cripple me and I might have died not knowing what happened," she explains. At one point, she also took riding lessons as a way of post-trauma therapy. "I would be paranoid about everything from just a sneeze or a cough or a cramp, so intense was my trauma," she remembers. But her supportive husband and family rallied around her and made it possible for her to come out of it. She began her career along new lines, developed new hobbies, and made new friendships. Her husband and she began to think about how they could create the family they so desperately wanted to have.
Jigna with husband Prakash
Today, Rao is an advocate for health-related issues with special focus on women's health. Rao speaks at lectures and conferences attended by medical professionals by providing a patient's perspective. "I want to bring brightness to the issue of TB which is treated like a sickness of the dark and which many feel should remain in the dark," she says.
She works closely with many non-profit and government organizations including Results, Stop TB, USA and Global TV Institute of New Jersey Department of Health to help eliminate disparities. Among the many committees and organizations she is a board member of, is Womanspace, an organization that helps victims of domestic violence and sexual abuse.
"I wanted to stand up and talk about the disease. It was difficult. I was shocked to find that most people around me, including members of the medical fraternity, didn't know much about TB because it had sort of fallen off the mainstream radar," she found.
It was more difficult because she could not find anyone within her community and her network of friends who suffered from TB. If at all, there were some, no one was willing to talk because of the huge social stigma attached to the disease, especially if it affected women. TB usually results in social isolation of the patient. She even visited infectious disease specialists to find out whether there was any support group or a patients' forum for TB. She could not find any. So she took it upon herself to bring awareness. "Infertility in a woman brings a sense of shame, of being a failure and I felt both. But it was not the end of the world too," she says.
Rao finds that because India has a high incidence of TB infection, the minute a woman visits a doctor to find out whether she is infertile or not, the doctor first puts her though all tests related to TB and then if these tests are negative, puts her on an infertility programme. So, the level of suspicion of TB among the medical fraternity in India is quite high, she surmises.
Among the activities she does now to promote healthcare of South Asians living in the US.
"My immediate concern is to raise the level of suspicion of TB in the US among the medical fraternity because right now, it is quite low," Rao reiterates. She advocates through her talks that - TB is not a reflection of any one's character, that it can spread to others only through breathing and, that it is not a lifestyle choice. "I want the medical fraternity in the US to usher in a new era in TB management. Knowing that my ordeal with TB has been useful for someone else means that the experience has constructive outcomes and not solely negative consequences for my life," she sums up.
Jigna Rao's life today might be different from what it could have been had she not suffered from pelvic TB but it holds its own promise, own hopes and message for others. --IBNS