PERSONS living with filaria are often subjected to discrimination due to the stigma attached to the disease, says Keisha Newton, a caregiver of the Neglected Diseases Unit of the

Ministry of Public Health’s Vector Control Services. These persons, she said, also lose the support of family members, close friends, and other persons who may be able to play a key role in their support process, leaving them no choice but to seek care at medical facilities. The situation, she said, is an uneasy one.

“The other day, a middle-aged guy, he came and one side of his feet was really huge, and it smelled. So now, there is where they get discriminated (against). When they walk among people, people will pull aside and they would feel bad. His foot looked alright, but when he raised it up, it was infested with worms. He was willing to give up and he was willing to cut it off, but there are not (many) family members to help him even if he does that. There is no proper shoe to fit him. He has to put his foot in a bag and move around with that.”

That was just one testimony of Newton’s experiences with her filaria patients, as she reflected on the emotional state of filaria (lymphatic filariasis) patients seeking basic care and support at the unit.

Basic care and support, such as counselling, therapeutic treatment, financial and other forms of assistance, go a long way towards making filaria patients feel that all is not lost.

Newton added that she has seen many persons quitting or refusing to take initial treatment for filaria, since they could not face the level of discrimination they experience from time to time. However, staff members at the Neglected Diseases Unit go the extra mile to extend ‘help’ in any form, since persons affected with filaria often cannot help themselves.

Ranetta Paul, another staff member of the unit, said: “Most filaria patients can’t help themselves. (There are) young persons who think that life is over, they think about committing suicide; and sometimes we (have) to counsel them, because most times family (members) don’t support.”

Other caregivers alluded to the fact that most female filaria patients suffer the greater challenge of losing their husbands, who in most cases are the financial support of the household. One such caregiver, who held back nothing, stated: “I had patients (whose) husbands left them because they got filaria. Some of them had to leave their jobs, and they ended up in a bad state. Because, if you have to leave your job, you are not getting any money from anywhere; so they go for the public assistance, but they don’t get it.”

Caregivers and nursing assistants working in the unit would extend personal assistance to filaria patients in the form of money for transportation and food, since most of these patients are pensioners who can’t work, and therefore have no source of income.

Observing these experiences shared by filaria patients, Cheryl Hopkinson, Nursing Assistant attached to the Neglected Diseases Unit, pointed out that her responsibility as a nurse becomes more challenging when patients do not have financial and family support.

EXTRA MILE
“As a nurse, you always have to go the extra mile, because you feel for your patients. Your patients become your family; it’s like you take them home with you. I like being a nurse, I must say that; and I enjoy my work, because you get to see that your patients get over their sickness, some of them, because they do what you say and you feel rewarded,” Hopkinson added.

One such example is Annie, (not her real name) a mother of five, who has benefited from the services and assistance from Nurse Hopkinson. Hopkinson worked with Annie for nine years, and has seen her go through major challenges.

“I have been working with Annie since 2007, and through the time, she has gone through a lot of changes and I must say a lot of challenges, because there were times when she could hardly make it to come to clinic, and you would have to visit her at home, or the children would have to assist her,” the nursing assistant explained.

Annie was most reluctant to speak of her experience, but identified some of the challenges she faced after being diagnosed with the disease.

INITIAL SIGNS
“I started feeling sick, vomiting. It first started with a boil on the left leg at the side, and it started to swell; and then I started getting fever, inside fever and headaches. I was pregnant when these things were happening. I was in the hospital after my child was born. I was constantly visiting the hospital, though. After giving birth, I couldn’t breast feed because of the treatment they were giving me,” Annie said.

Annie described how life changed for her after she had been diagnosed with filaria. Although she didn’t say much, her comments spoke volumes, as they revealed how hard life was for her and her children.

“Life was very tough, it was very hard. Family and relatives (assisted) me; they (doctors) just used to give me medication, no private visits. I don’t like how I feel sometimes; I don’t feel good with this thing, but life still has to go on. But I wish it wasn’t this way. My husband leave me, I had to work different places to support the children back then. Now I don’t only suffer from filaria, I have to take treatment for pressure, for sugar, cholesterol, and mental care at the nerve clinic,” Annie detailed.

The experiences of this and other filaria patients have led Nurse Hopkinson to say, “Don’t discriminate against them, because none of these patients went to the shop and bought filarial, or any other sickness for that matter. So we don’t know what is there for us tomorrow; it could happen to anyone.”

Those who continue to experience progressive swelling are declared to have elephantiasis, and are in for a life of painful disability. As the severity of the disease becomes more apparent, social and economic stigma follows.

Persons diagnosed with filaria may experience grotesque enlargements of their affected body parts, which include the arms, the legs, and the genital areas. When such swelling occurs, the patient is said to have progressed to a stage of “LF”, known as elephantiasis, a term designed for the elephant-like texture of the resulting skin. (Evans, Gelband & Vlassot 1993).

The Neglected Diseases Unit of the Vector Control Services is working towards eliminating filaria. Staff members working within the unit say Guyana being filaria–free is possible, but this requires a collaborative effort from all stakeholders.

Filaria is a parasitic disease caused by microscopic, thread-like worms and/or roundworms. Humans are affected after being bitten by the culex mosquito, and could take as long as 20 years before showing initial signs of the infection.

Filaria can be considered a neglected disease, since persons showing signs of the infection are neglected and most likely treated with scorn. There is no cure for the disease, but treatment and ‘preventables’ are put in place by health agencies worldwide.

In Guyana, filaria, also commonly known as elephantiasis or big foot, can affect both men and women. When the male is infected in his genital area, it is called hydrocele, or ‘goady’.

Filaria carries a stigma that causes mass discrimination across society’s base. Persons who have big foot can suffer lifelong consequences, taking away from their potential to have a good life.

Preventative measures and treatment are enforced in over 70 countries worldwide in an effort to reduce, or even eradicate, the neglected disease.
Tremendous efforts have been made through national programmes wherein more than 5.6 billion treatments have been delivered worldwide.

The Global Programme to Eliminate Lymphatic Filariasis (GPELF) was launched in 2000 to further eliminate filaria. By the end of 2014, sixty-two of 73 endemic countries had implemented Mass Drug Administration (MDA).

GUYANA TAKES ON FILARIA
Mass Drug Administration (MDA) is promoted in Guyana as the only prevention and treatment method for filaria. MDA aims to treat an entire population within a country through administering a curative dose of medication to vulnerable citizens without first testing for infection.
There is no cure for filaria, but it can be prevented. The MDA exercise is annually spearheaded by all public health agencies worldwide. Individuals also have a personal mandate to keep their surroundings clean and free of breeding sites for (culex) mosquitoes that carry the worm. The use of treated bed nets is also recommended.

The Neglected Diseases Unit, through funding from the Government of Guyana, provides slippers, towels, buckets and basins to filaria patients for them to wash their feet. Dressing and bandage are also given for covering and further treatment.

The Ministry of Public Health has, for a number of years, been collaborating with agencies such as the Pan American Health Organization/ World Health Organization (PAHO/WHO), Centre for Disease Control (CDC), Georgetown Public Hospital Corporation (GPHC), and a number of non-governmental organisations in reducing the number of filaria cases within the country, the Government Information Agency (GINA) has said.

The process of treatment at the Unit of the Vector Control Services starts with evaluation. The patients are evaluated, then tested to confirm that there is indeed in the system microscopic thread-like or roundworms that would eventually cause filaria.
If the worm is detected, treatment begins with the administration of albendazole or diethylcarbamazine citrate (DEC) at pre-specified doses. This medication kills the worms that would eventually cause swelling of the groin or limbs, more specifically the leg.
For persons who have advanced stage of filaria, the C.A.R.E treatment method is recommended, since the swelling is irreversible. C.A.R.E. stands for: C – cleaning the wound, A – applying treatment, R – raising the leg, and E – exercise.

The recommend treatment to prevent any form of filarial infection is receiving medication through the MDA once annually for five years.
(By Delicia Haynes)