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Human Story

Lymphatic Filariasis: "A Neglected Tropical Disease"
Changing Awareness through Determined and Passionate Patient Care

PhotoMs. Rina Tanaka at a patient support group meeting with workers from the community clinic *All photos were taken in Taraganj Upazila, Rangpur District

"Bring us medicine"

Lymphatic filariasis is one of the "neglected tropical diseases", which receive very little attention despite the huge number of people afflicted. While there are no apparent cases of filariasis in humans in Japan, more than 100 million people are infected with the disease worldwide.

Rangpur District in northern Bangladesh has a particularly large number of filariasis sufferers in comparison with other areas of the country. The mass administration of vaccinations to prevent the disease among other measures have led to a decrease in the number of new cases of infection, but sufferers already experiencing symptoms must cope for the rest of their lives with a disease that cannot be completely cured.

Ms. Rina Tanaka, a 31-year-old nurse from Osaka Prefecture, worked to provide care for filariasis sufferers, as a JICA Overseas Cooperation Volunteer based in Rangpur District, for two years starting in September 2012. There are 1,573 cases of filariasis in Taraganj Upazila, Rangpur, which has a total population of 157,000. Ms. Tanaka travels around the villages, hosting regular gatherings to teach patients how to care for their symptoms on a day-to-day basis. Her aim is to prevent their symptoms from worsening and to help them to live comfortably.

Filariasis is caused by parasitic larvae which are deposited in the body by mosquitos entering the lymphatic system. Symptoms are swelling body parts, such as the feet and genitals, accompanied at times by pain. As reflected by its other name—"elephantiasis"—in many cases people afflicted with the disease face discrimination and prejudice due to dramatic changes in their appearance.

PhotoThe feet of a female village resident in her sixties. The symptoms of filariasis started in her twenties but she did nothing about them.

Many sufferers have given up on the hope of their condition ever improving. The disease is rarely fatal, but at the same time there is no medicine which can completely cure it. When Ms. Tanaka visits the villages, she is often told, "If you're going to come, bring us medicine. You have medicine, right?" She then replies in fluent Bengali, saying, "Look, there is no medicine to cure this. I wish I could bring you medicine, but there is none."

While the disease cannot be fully cured, it is possible to stop the symptoms from worsening by keeping the affected area clean and doing regular exercise. Patients develop a positive outlook on life, and the attitude of those around them changes too. The hope of getting filariasis sufferers to be aware of this encouraged her to be persistent in her efforts to get through to those living with the disease and persuade them to come to the monthly meetings at the community clinic.

Encouraging partners

Surrounded by rice paddies stretching out peacefully on all sides, stands the Taraganj Upazila Bisnupur Community Clinic. In the small garden of the clinic, chairs are lined up in shade for the fifth meeting of the support group for filariasis patients.

PhotoShowing patients how to wash their feet and the importance of keeping them clean.

There are eight patients taking part today, gathered around in a circle. The session begins with checking the participants' blood pressure. This is not directly related to the care of filariasis, but it is an effective way of encouraging people to come to the meeting, because blood pressure checks normally cost 10 taka a time at a hospital. By introducing such elements to the meetings, Ms. Tanaka has made patients feel like they are getting an additional benefit while also making useful health checks. After the blood pressure checks, Ms. Tanaka and the clinic workers measure the size of the patients' affected areas using a tape measure, to find out if the symptoms have worsened since the last meeting. A medical record is made for each patient and their condition is explained to them.

The care of filariasis patients starts with maintaining the cleanliness of the affected areas. The patients participating in today's meeting are affected in the feet area, so the clinic workers wash each patient's feet carefully in a basin of water. Keeping the feet clean prevents the smell that comes from between the toes. "Some patients tell us that even their family won't get close to them because of the smell. So we tell them that they need to wash their feet properly if they want to enjoy spending time with their family," says Ms. Tanaka.

"Have you are all been doing your exercises? Do you wear your sandals?" ask Mr. Bibrata Kumar Dutta and Mr. Md. Mozibr Rahman, local government workers in charge of public health in Taraganj, who support Ms. Tanaka to prevent and care for filariasis. They play a significant role, visiting each of the communities they supervise by bicycle to raise awareness about filariasis patient support groups and vaccinations. "As civil servants, we need to be good role models. There's no way we could slack off," they say.


PhotoMr. Bibrata Kumar Dutta (in front) and Mr. Md. Mozibr Rahman (behind), local government workers in charge of public health

"It's thanks to their work that the patient support meetings in this area have kept going," says Ms. Tanaka. The passionate efforts of Mr. Dutta and Mr. Rahman to raise awareness moved the hearts of the patients. While the patients were used to people not wanting to touch their affected areas, the clinic workers wash them carefully. For the first time, patients find out that with the right care, they can prevent their symptoms from getting worse. They get together with people who share the same concerns as them. As they gather experience and knowledge, they build up the confidence to tackle the illness that even they did not want to confront.

One of the members of the group is a woman in her sixties who has lived with filariasis symptoms since her twenties but had done nothing about them until coming to the group. Each time she came, she would ask for medicine, but the last few times she has stopped asking. Today, she is the very first to answer when Mr. Dutta asks the group why they think the care is necessary, saying loudly, "If we don't keep the affected areas clean, the symptoms will get worse." Patients bring along new patients, and more and more people learn about the meetings by word of mouth.

At the end of the meeting, all the participants join in seven types of simple exercises, such as rotating or stretching their ankles. Although they may feel shy, the participants take it in turns to come out to the front and lead the exercises. "I hope that one day the patients will be able to organize and run meetings like this themselves," says Ms. Tanaka.


Photo"If the affected areas are not kept clean, the symptoms get worse—that's how I realized that I need this care," says the group member with Ms. Tanaka (right)

"When I was worried I got out in the field"

In addition to her experience as a nurse, Ms. Tanaka also studied acute-phase nursing at graduate school. However, currently her interests lie in community healthcare and home-visit nursing. Unlike nursing at facilities with cutting-edge equipment and highly-trained staff, care in these fields is provided in less than ideal conditions.

There are similar aspects to providing care in developing countries. The important thing is to think about what can be done with what is available and how both patients and healthcare workers can stay motivated. In Bangladesh, Ms. Tanaka discovered that it is such passion that gives the patients strength to live.

"When I felt worried or down, I would get out into the field," says Ms. Tanaka. "I think that a huge asset for me is having had the opportunity to meet Bangladeshi people whom I really respect, like Mr. Dutta and Mr. Rahman—they get out there on their bicycles and really get in touch with the people of the community."

Coming face-to-face with overwhelming poverty quite unlike anything in Japan was also an opportunity for Ms. Tanaka to reconsider what is important for humans to live and pass away with the dignity and comfort. "I am confident that I can put my experiences in Bangladesh to good use when I work in home-visit nursing and community health care back in Japan," says Ms. Tanaka.

The support group meetings bring fellow patients together to learn about thorough day-to-day care. In fact, in the case of filariasis, there are very few examples such as this in which measures are focused on patient care, as opposed to prevention. Ms. Tanaka highlights that if the data collected through the regular measurements at the meetings can be used to prove that patient care such as this leads to the alleviation of symptoms, it will provide a rare precedent for the world.

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