Filaria…social stigma shuts out affected persons from society
A GINA feature By Delicia Haynes – November 4, 2016
“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. 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 much 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 of Keisha Newton’s testimonies of her experiences with one of her filaria patients. Newton, a caregiver attached to the Ministry of Public Health’s Vector Control Services’, Neglected Diseases Unit, reflected on the emotional state whenever a lymphatic filariasis (lymphatic filariasis) patient seeks basic care and support at the department.
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.
Persons living with the disease are often subjected to discrimination due to the stigma attached to the disease. They 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.
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, the staff at the Neglected Diseases Unit go the extra mile to extend ‘help’ in any form since these persons, many times cannot help themselves.
Ranetta Paul, another staff of the department said that, “most filaria patients can’t help themselves. They have young persons who think that life is over; they think about committing suicide and sometimes we got to counsel them because most times family don’t support.”
Other caregivers alluded to the fact that most female filaria patients suffer the greatest challenge of losing their husbands who in most cases are the financial supporter of the household. One such caregiver who held back nothing stated, “I had patients where their husbands left them because they got filaria, some of them had to leave their jobs, and they end 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 nurse assistants working in the department would extend personal assistance to the 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 other source of income.
Observing these experiences shared from filaria patients, Cheryl Hopkinson, Nurse 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.
“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 benefitted 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 nurse assistant explained.
Annie was most reluctant to speak of her experience, but identified some of the challenges after being diagnosed with the disease.
“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 feeding because of the treatment they were giving me,” Annie said.
Life after Diagnosis
Annie expressed her view of how life was for her after being diagnosed. Although she didn’t say much, her comments spoke volumes as it revealed how hard life was for her and her children.
“Life was very tough; it was very hard, family and relatives assist 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.”
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 filaria 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 follow .
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 L F 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 working within the department say
that 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 as 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, which is 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 the individual’s full potential of having 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 where 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, 62 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 infections.
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 of keeping 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 been collaborating with agencies such as the Pan American Health Organisation/ World Health Organisation (PAHO/WHO), Centre for Disease Control (CDC), Georgetown Public Hospital Corporation (GPHC) and a number of Non-Governmental Organisations for a number of years in reducing the number of filarial cases within the country.
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 microscopic thread-like or roundworms in the system 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 will kill the worms that will eventually cause swelling of the groin or limbs, more specifically the leg.
For persons who have advanced stage filarial, the C.A.R.E treatment method is recommended since the swelling is irreversible. C.A.R.E is C – cleaning the wound, A- applying treatment, R – raising the Leg and E – exercise.
The recommend treatment to prevent any form of filaria infection is receiving medication through the MDA once annually for five years.
By: Delicia Haynes