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Doctors say, worldwide, some 20 million people carry HTLV-1, or Human T-Lymphotropic Virus, Type 1. While the vast majority of people infected with HTLV do not develop any related disease - a small minority of individuals, about one in 20 of those infected, will develop a disease due to HTLV.
At age 13, Cynthia Okada began to have trouble walking.
“My feet were clumsy and sometimes I would fall for no reason,” says Cynthia, “the children would make fun of me a lot.”
There is no effective treatment available to relieve her condition, or to get rid of the viral infection. Eventually, Cynthia’s health problems forced her to leave school. She gradually lost all use of her legs.
This would be traumatic for anyone, but it’s especially difficult for Cynthia, because she lives in the steep hills surrounding Lima, Peru. A hundred stone steps trap her in her home. Her family is far too poor to move downhill.
At 28 years old, Cynthia has barely left the house in 10 years.
“I sometimes think that I’m in a dream and that I will wake up. But I’m very realistic,” Cynthia says. “I see my life as it is, with my illness. What I would like to have is work, to be able to sustain myself economically, to be able to cover my own needs without having to ask anything from anybody. The little that I was working, I had to leave behind because I wasn’t able to do it. But I try to help out as much as possible. I wake up early, I tend to the children, get them ready for school. I prepare their lunch boxes, their food. That’s how I see my future. Finding ways to help, little ways to help, in the ways that I can, to feel useful.”
Signs and symptoms of HTLV-1 vary - but may include progressive weakness, stiff muscles, muscle spasms, backache, a 'weak' bladder, and constipation. But the majority of people have no symptoms at all, and don’t know they’re infected. They are known as “asymptomatic carriers”.
Doctors say Cynthia most likely became infected with HTLV-1 as a baby, during the normally healthy practice of breastfeeding. Her mother was unaware of her own infection and had no symptoms at the time. But now, she, too, is crippled, and confined to their home. So is one of Cynthia’s brothers, who also suffers from crippling related to HTLV-1 infection.
“Oh, I would love to get a little better,” says Matilde Jimenez, Cynthia’s mother. “To be able to walk around some, to help in my house. To help my children, with everything. But I can’t. I can’t. I don’t know what will become of my life.”
The virus is most commonly transmitted by blood transfusions, shared needles and sexual intercourse. That leads to people – even doctors – to confuse HTLV-1 with HIV, the virus that causes AIDS. For this reason, HTLV-1 patients say they suffer the same kind of discrimination long endured by people who test positive for HIV.
Dr. Eduardo Gotuzzo is one of the world’s leading experts on HTLV-1. He’s the director of the Institute for Tropical Medicine in Lima, and he has studied HTLV-1 for 20 years. He says, in addition to problems with the legs, the HTLV-1 virus is also linked to certain types of cancer.
Dr. Gotuzzo says patients can develop “a smoldering leukemia, that is very slow or chronic leukemia. Then you have cutaneous lymphoma, then you have lymphoma, it’s non-Hodgkin’s lymphoma. And then, finally, you have acute T-leukemia, and this disease has the worst prognosis in the malignant disorders. Everybody is dying in less than one year.”
In an effort to prevent the spread of the virus, Dr. Gotuzzo helped convince Peru and Brazil to screen blood donors for hidden infections. Before routine screening, one of his patients likely became infected through a blood transfusion. Unaware of the virus, she infected her first child, through breastfeeding. After she was diagnosed, the woman had two more children. She did not breastfeed them, and they are not infected.
Dr. Gotuzzo is trying to convince all Latin American nations to screen blood donors for HTLV-1. “They need to do the blood screening,” he says. “Colombia or Ecuador or Venezuela, they have money to do that, and they have the virus. And for me, it’s unfair, to transmit it to one lady, the virus, and then the lady is coming up pregnant, and she provides breastfeeding to her kids, and the kids are affected. And this kid could have leukemia 30 years later. To me, it’s unfair.”
Peru has been successful in persuading many sex workers to use condoms, preventing the spread of HTLV-1 and other sexually transmitted diseases. But Dr. Gotuzzo has a warning.
“The people feel the risk is only when you go to female sex workers. No, no, no!” he says. “If you are monogamous, it’s OK, but if you have another partner - that sexual intercourse is dangerous for different diseases and one of the diseases, of course, is HTLV-1.” It’s important to note that people who don’t know they have the virus are still capable of passing it on to others.
“Almost 90% of these people are asymptomatic,” Dr. Gotuzzo says. “But all the time they are contagious, as with any other retro-virus. They are transmitting all their life.”
Dr. Gotuzzo calls HTLV-1 one of the world’s most neglected emerging diseases.
He says, “We have had this disease at least 400 years in Peru. However, right now we are discovering the real burden of the disease.”
Dr. Gotuzzo explains that HTLV-1 is so neglected – it’s not even on the “neglected disease” list. He says, “It’s not on the list of priorities, and nobody cares, because, there are not treatments, for instance, there isn’t research for a vaccine, there isn’t money to support science on this virus, because people feel this is a very isolated problem. But really,” he says, “it’s not an isolated problem. This is a worldwide problem.”
Dr. Gotuzzo is determined to convince people to pay attention to HTLV-1, a mysterious virus threatening the health – and mobility – of people at risk in many parts of the world.