-govt to step up awareness as new cases pick up

For many years, Daniel (not real name) had noticed a discoloration in his skin but the thought of Leprosy had never crossed his mind, maybe “lota” but never leprosy.

There were times when those pale spotted areas on his body would become numb but it was something he had taken for granted up until 2010 when he became severely ill while working in the fishing industry.
“At first I didn’t take it seriously because of my work, and the people that were depending on me but it got overbearing. I was constantly in pains, and every time I eat, I would get bad feelings,” he recalled.
Daniel had then taken a decision to seek medical attention privately, but according to him he was misdiagnosed. “The doctor told me I had kidney problem, so he was treating me for Kidney all along but instead of getting better, it had gotten worse to a stage that I was vomiting blood,” he explained.

Within the first three years of seeking medical help, Daniel had turned to two other doctors, all of whom gave similar diagnosis. His ill health resulted in him being dismissed, and in response, he turned to a popular hardware store in the City of Georgetown for employment. “I started driving for these people, but in addition to the vomiting, I started experiencing ulcers due to the driving. My fingers started crumbling,” he said.
Before the father of one knew it, he was out of a job for a second time. “I end up going at West Dem Regional Hospital, and they detected it and refer me to the Skin Clinic.” It was then in 2010 that Daniel was diagnosed with Leprosy by the doctors attached to the Public Health Skin Clinic situated on Brickdam within the compound of the Palms Geriatric Home.
“Leprosy,” the news of this disease had sent chills up his spine. Besides knowing it to be a dreaded disease during the biblical days, Daniel had little knowledge on it.
According to the World Health Organisation (WHO) Leprosy is a chronic disease caused by a slow multiplying bacillus or a rod-shaped bacterium called Mycobacterium leprae. Due to the nature of the disease, which is also known as the Hansen’s disease, it is transmitted via

droplets, from the nose and mouth, during close and frequent contacts with untreated cases.
However, it takes approximately five to eight years to develop while symptoms can take as long as 20 years to appear. Affecting mainly the skin, the peripheral nerves, mucosa of the upper respiratory tract, if left untreated can result in progressive and permanent damages to the skin, nerves, limbs and eyes.
After more than two years of undergoing treatment at the government run skin clinic, Daniel has been cured of Leprosy. However, he was cured at a time when the disease had significantly advanced resulting in deformity. Due to the loss of tissue, his fingers and toes have become shortened and deformed.
“On the left side of my foot I have no toes. On the right side the toes are shortening, and I have ulcers on all two feet. I have an ulcer on my elbow – the bone actually is out and so you don’t have to ask about the pain, it is terrible,” he explained while sitting in the building that houses the Skin Clinic.

Now, he is advising persons to know the signs and symptoms of Leprosy. “If you see any mark, any mark, and you know you haven’t gotten a scratch from somewhere but you seeing a discolouration or feeling numbness about your body, seek public medical attention.”
“If I had gotten this diagnosis early, maybe, maybe, I would have still had my toes, and my fingers would not have been shortening,” he said. Although being in excruciating pain at times, Daniel says he still tries to help out around the house. From Monday to Friday he rides his daughter to and from school on a motorcycle, and does chores around the house, but there is not much he can do financially.
Need finance
“I have applied for public assistance three times, and after more than a year I can’t get no assistance,” he complained while explaining that his wife will soon be out of a job. “She cleans for about $8,000 a week, however she is soon to be laid off, she and five others. She had three C-sections, and of that, two were miscarriages. The last one, caused her like four seizures, so she can’t walk too long or stand up in the sun,” he added. To supplement his wife’s income, Daniel’s sister-in-law and father-in-law would support them financially from time to time.
“I have my daughter going to school the requirements is really hard on me but sometimes my father-in-law would pitch in. He helps us out by buying shoes and uniform for my daughter.”
Discrimination
Though Daniel receives the support of his immediate family, his in-law, and that of medical personnel at the Skin Clinic, he is ever so often discriminated against in public places and even by his own family. “Everywhere you turn, you go to the market, people does look at you and turn up their face, and walk away. I was in a bus one day, and a guy look at me and seh you is a alligator, and he just pass me and went down to the back of the bus, and when he come out, he turn and tell the conductor look at that man like he get AIDS,” Daniels said as he broke down in tears.
“I have been discriminated against by my own brother. He don’t even look in my direction, since I got sick, he turned his back on me,” he added fighting back tears.
No friends
The neglect and discrimination experienced by Daniel has caused him to develop a love for animals, mainly chickens. “I have no friends. I have no friends…I does mine some chicken as pet because I need company but even when I go to buy chicken feed, I am discriminated against. One time this woman laugh at me and seh, you brukin out, like you get AIDS,” he related.
Uphill task
Head of the National Leprosy Control Programme, Dr. Nikita McKenzie, who manages the Skin Clinic, said removing the stigma and discrimination surrounding leprosy remain an uphill task for health workers not only in Guyana but across the world. Contrary to popular beliefs that Leprosy is a curse in the form of a disease that was handed down by God and causes parts of the body to fall off, Dr. McKenzie said it must be known that Leprosy is a curable disease.
“It is not one of the diseases that you should fear. It is curable,” she emphasised while explaining that within days of being treated the patient can no longer transmit it. Instead of putting up a barrier, Dr. McKenzie believes that Guyanese should become knowledgeable of the signs and symptoms associated with the disease.
“It is a disease that affects all organs except the brain, the lungs and the spinal cord. It affects every other area. It can go from just the skin patches to the raised infiltrated skin lesions all the way up to the infiltrated areas of the face, such as cheek bone. It could also cause flattening of the nose bridge, loss of eyebrows, hair loss to the eye lashes. It can also cause blindness if complications get so far, if left untreated leprosy,” she pointed out.
However, if detected during its early stages, Dr. McKenzie said the many of the deformities could be prevented. In an effort to raise greater awareness, detect and treat patients, Dr. McKenzie with the help of Dr. Lorraine Katon, five nurses and a medical technologist attached to the skin clinic and by extension the National Leprosy Control Programme, has been conducting outreaches in several regions in addition to the weekly clinics held at the Palms.
In addition to Georgetown, clinics are held monthly in Skeldon, Port Mourant and New Amsterdam in Region Six and at the West Demerara Regional Hospital and Parika Health Centre in Region Three. Clinics are also held at the Lodge, David Rose, Grove and Soesdyke Health Centres, in addition to the Linden Hospital Complex.
During these outreaches, Dr. McKenzie and team look for the usual signs, and once a diagnosis is made, the patient is placed on a six month or one year treatment plan depending on the severity of the disease.
The treatment is a Multidrug therapy (MDT) which has been made available by WHO free of charge to all patients worldwide since 1995. However, some patients for varying reasons either refuse the medication or stop taking it abruptly – decisions Dr. McKenzie strongly advises against.
Screening family members
It was noted too that once a leprosy patient is identified, family members who have been in close and constant contact with the individual over a number of years are screened.
“But we not only examine the patient but family members and persons who have been in close contact with the patient because Leprosy is not a disease of the person but of the family…Once a family member is showing signs we treat them as well, and cure them of the disease before it could even advance,” she posited.
In effort to complement the work of the team at the skin clinic, the National Leprosy Control Programme with technical support from the Pan-America Health Organisation (PAHO) hosted a training programme last September to develop the capacities of health care workers to detect, treat and manage leprosy.
The one week training session was facilitated by US Occupational Therapist Linda Lehman and Leprologist Dr. Jaison Barreto of Brazil with the support of local doctors. Notably, it also attracted health care workers not only from Region 4 but from Regions One, Seven, Eight and Nine as well. On the completion of the programme, Minister of Health Dr. George Norton said the 20 healthcare workers who attended the training are now better positioned to detect, treat and manage cases of leprosy, and also prevent and or minimize impairments in the identified regions.
22 new cases yearly
While Guyana, over the last two decades, has been reporting an average of 22 new cases annually – thereby reaching the target of leprosy elimination which is less than 1 per 10,000, the country’s Chief Medical Officer, Dr. Shamdeo Persaud said there has been an increase in the number of new cases.
With the youngest person being six and the oldest 64, the National Leprosy Control Programme has already registered more than 31 new cases for the year. “We were averaging about 22 per year, but this year it has bounced up back a little bit and we noticed some newer and younger people who are also affected, and many of the cases have links to the older cases,” Dr. Persaud explained.
As such, he said maintaining surveillance around the contacts such as immediate members within the family is important. But like many other countries, Guyana is experiencing some limitation in the fight to reduce the spread of Leprosy, the CMO said, explaining that specially trained technicians to do the smears are needed.
“There are two types, there is a multibacillary form of leprosy where you can easily identify the organism, and then there is a paucibacillary which is harder to detect. So the skill of the technician is very important to identify these cases,” he further explained. The country, however, is putting the necessary systems in place to align itself with Global Leprosy Strategy 2016-2020.
The strategy, themed, “Accelerating towards a leprosy-free world,” aims to revive efforts for leprosy control and to avoid disabilities, particularly among children affected by the disease in endemic countries.
According to WHO, it is a strategy that focuses on the need “to sustain expertise and increase the number of skilled leprosy staff, to improve the participation of affected persons in leprosy services, and to reduce visible deformities – also called grade-2 disabilities (G2D).” Removing the stigma associated with the disease, is also key on the agenda.
Elimination of leprosy as public health problem (with a prevalence less than 1 case per 10 000 persons) was achieved globally in the year 2000. Additionally, more than 16 million leprosy patients have been treated with MDT over the past 20 years.