ºÚÁÏÍø

April 24, 2014

Since 2013, I have been helping with ºÚÁÏÍø’s commitment to provide diethylcarbamazine (DEC) tablets to the World Health Organization (WHO) in order to contribute to the elimination of lymphatic filariasis (LF) worldwide. To make a wider-ranging contribution to individuals living with LF beyond merely providing treatment drugs, we organized a meeting between patients and ºÚÁÏÍø employees in charge of various targeted countries to better get to know one another. This meeting was held in the Philippines, a country where LF remains endemic.

During my visit, I was able to meet with five patients with LF whose ages ranged from 16 to 77. Although they showed different stages of elephantiasis—the characteristic swelling of the legs that resembles those of an elephant—and each was living under different conditions, most of these patients were facing destitution. These individuals also suffered from a lack of knowledge about their disease and had been on the receiving end of repeated misdiagnoses, both facts that underlined for us how low the level of awareness and understanding remains for this disease.

One of the patients at the meeting was a 16-year-old boy. This patient had failed to receive any tablets during a mass drug administration (MDA) program held in his area as he had been temporarily living with his grandparents some distance from the targeted area. Unfortunately, this had resulted in his contracting the disease. He was now so small in stature that he could have passed for an elementary school pupil, while his left leg showed pronounced signs of elephantiasis that were so severe that he had been unable to attend classes beyond his first few years of elementary school. Although he was very shy in the beginning, he gradually warmed up to us and was even singing songs for us by the time the meeting had ended.

Another patient who attended the meeting was a 50-year-old woman who had been abandoned by her husband because of the disease, and who now felt so ashamed of her illness that she could not see her life in a positive light. Since at first she had thought that her symptoms were caused by an evil spirit, she originally did not seek medical consultation and even after she did start seeing a doctor, she suffered from repeated misdiagnoses. Although she found it unbearable that her leg was disfigured, she nevertheless expressed her hope that someday she would receive proper treatment and recover from the pain, fevers, and swelling from which she constantly suffers.

Since many of the patients seldom communicated with anyone outside their immediate family, they were understandably tense at first when talking with us as we were not only outsiders to them but foreigners as well. In time, however, they gradually opened up and began to enjoy the occasion.

Since the sizes of their left and right feet were different, all the patients wore custom-made sandals that had been provided by the Philippine Department of Health. The only available remedies for this type of leg or foot disfigurement were continued care, including the cleaning and dressing of infected areas and massages, as well as surgery. It was pointed out to us, however, that surgery would not completely restore patients’ legs and feet to their original condition.

Although there are many people currently infected with LF in the world today, the number of individuals who are suffering from visible symptoms like elephantiasis is relatively low. Further, since many of the most seriously affected patients are forced to live a subdued life away from others, this meeting was actually the first time for most of the patients to meet with another individual suffering from the same disease.

Aside from our provision of DEC, this trip inspired us to launch more concrete supportive activities, including to increase public awareness about the disease in various regions and to offer further assistance for MDA programs to help provide relief to all patients already suffering from this disease worldwide.

Reporter