ISSUE 058, March 16-31, 2012
11
Unfiltered, uninhibited…just the gruesome truth
Scorn of a child with cerebral palsy: A medical condition that is shrouded in myths By CAROLINE WANGECHI What is this disease? What causes it? Is it curable? These are some of the questions that race through our minds every time we see a child with one or more malfunctioning limbs. In a bid to explain the condition, people have ignorantly branded it the curse, the omen and some even view it as punishment for sins committed by parents. Ten-year-old Cynthia Nyakio knows this all too well. She has heard it all with neighbours and relatives viewing her as the black sheep of the family. “Life has been a nightmare for me ever since my daughter developed this condition back in 2005,” says Jane Muringo. With tears in her eyes, the mother of two explains how relatives and friends started avoiding her, claiming that she was cursed. Her family turned into the subject of ridicule.
Abandoned
Muringo’s only companion in the lonely journey of raising a child with cerebral palsy was her husband. He soon grew tired of the scorn and abandoned them making life even harder for Muringo and her children. “Being the father and mother for my children especially Nyakio has made it very difficult for me to find a job to sustain us,” she says. “I am forced to lock her up in the house as I go to find odd jobs to try and make ends meet.” Muringo’s ordeal is because no one is willing to take care of her child when she goes to work. Her bid to seek for assistance from the Government have not been helpful. The Ministry of Gender, Children and Social Development office in Kerugoya directed her to Joy Town School in Thika but that journey too proved futile. She was sent back to the Kerugoya office and despite paying an interview fee of KSh200 at Joy town, they told her that Nyakio was not viable as
they do not deal with such cases. In spite of all these odds, Muringo has learnt to cope with the situation as she now fully understands the pressure of cerebral palsy. She is, however, a bitter mother as she believes that her child’s condition was a result of a doctor’s negligence. A one on one interaction with Dr Ezron Macharia reveals that this is partly true as medical mistakes are one of the major causes of cerebral palsy. He explains that cerebral palsy is a non-progressive disease that affects the mortar system. “It is like a life sentence as once a child develops the condition, she/he has to live with it for the rest of their life as it is not curable but can only be managed through therapy,” explains Macharia. He notes that one of the most common Jane Muringo with her daughter Cynthia Nyakio who suffers from cerebral palsy. Due to mistakes that can lead to the condition is givalienation from her family, Jane is forced to lock her daughter in the house as she goes in ing a child wrong medication. search of casual jobs. Picture: Caroline Wangechi Macharia explains that a child’s liver is not fully developed and hence unable to detoxify in gait and mobility, impairment of sight, hearward are also at a higher risk than the rest. Presome proteins that need to be excreted such ing or speech and seizures as well as sharp mature infants of less than 37 weeks are also at as bilirubin. pitched cries. high risk. Bilirubin then finds its way to the brain and “One can easily detect a child with cerebral Lest we get too scared, Macharia is quick to gets deposited at the base causing a disease palsy by noticing that the child lacks concentraadd that only less than 10 per cent of the popucalled kernicterus that precipitates cerebral tion and looks disoriented from the environlation is affected by cerebral palsy. He advises palsy. ment,” notes Macharia. He adds: “A child with the public to accept those affected as part of According to Macharia other medical misthe condition usually has very disrupted sleeping them as this assists in their therapy. takes that can cause the condition also include patterns too.” “It is important to realise that it is not the leaving the child in the birth canal for too long fault of the affected that they are this way and causing lack of oxygen and failure to recognise neither is it a curse or a punishment for sins. and treat seizures. The risk of getting children with cerebral Anyone can fall victim,” explains Macharia. He went on that failure to diagnose and treat palsy can be minimised by ensuring that both Just like Muringo, people should get inmeningitis in time as well as failure to perform parents are not below 20 years and not above formed about the condition in order to be in a Caesarean section in presence of foetal distress 40 years. position to deal with those affected people like may also cause the condition. “People of African-American descent are her daughter. Macharia explains that excessive use of vacmore prone to getting children who will develop “I only wish someone would look at our uum extraction and failure to detect prolapsed the condition,” observes Macharia. struggles and have mercy on us or at least help chord is a regular cause too. Some other risks related to the child are when my child get to a special needs school so that Cerebral palsy manifests itself in various one of a pair of twins dies or children born with I can be in a position to fed for them,” says forms. The child may be seen to have muscle low birth weight. The first child and the fifth onMuringo as she sighs tearfully. tightness, involuntary movement, disturbance
Risks
Lupus silently claiming lives of young women By DORCAS AKELLO When you first meet Lillian Mogoro, one cannot help but notice the angelic smile that lights up her pale face and fragile body. Mogoro is not your ordinary strong African woman. Though only 20 years old, she has been weighed down by the burden of disease. Mogoro is a survivor of lupus, which was recently diagnosed after two years of struggling with different illnesses. “I realised I had lupus in October 2006 but before that every part of my body ached. I was sickly every now and then,” Mogoro explains.
Endless trips
She made countless trips to a hospital in Eldoret town but the doctors could not diagnose the problem. When the situation worsened to the point of her being paralysed, both feet and arms, her family decided to transfer her to Kenyatta National Hospital where she was diagnosed with lupus.
Lupus is an immune mediated disease that affects the body tissues and is usually due to the body attacking itself; it develops antibodies against itself which make it release substances that lead to inflammation. It occurs mainly to women of child bearing age because of hormonal issues that are at play, making women nine times more likely to get the disease than men. Some of its symptoms include about 90 percent of patients presenting joint pains different from arthritis, 85 per cent suffer skin disorders, oral ulcers, get hair loss,
variety lung disorders, heart muscle disorders, headache, seizures and psychiatric manifestations like depression. About 70 per cent suffer kidney problems in the course of the disease among many other symptoms. “This was a great breakthrough for me because then I finally knew what I was suffering from, only that I did not know what I was up against,” she observes. Mogoro, a mother of two girls, says the disease which has not been given much attention in terms of financing in Kenya is slowly claiming lives as many cannot afford its
“Because of the known specific symptoms, it is very possible to have the patients misdiagnosed, especially if they do not have access to qualified physicians or personnel.”
— Dr Phillip Simani, a physician and rheumatologist
treatment due to its high cost. According to Dr Phillip Simani, a physician and rheumatologist, lupus arises as an interaction between genetic and environmental factors. “Genetic factors are as a result of clustering of lupus in families, environmentally it is sun interacting with somebody who has genetic predisposition leads to it,” he explains. Simani says it is hard to diagnose the disease and one needs to be sensitive to it. “Because of the known specific symptoms, it is very possible to have the patients misdiagnosed, especially if they do not have access to qualified physicians or personnel,” he observes. According to Simani, if patients are not well taken care of and the disease is not well managed they may suffer miscarriage in most cases for those who are pregnant. “Some medication for lupus patients also
interferes with breastfeeding and survivors have to stop taking the medication in the course of the pregnancy and also when breastfeeding,” Simani noted.
Costly affair
According to another lupus patient who spoke on anonymity, it is expensive to handle the disease citing that seeing a doctor one has to part with between KSh1,500 and KSh2,000 for each visit. “Seeing a doctor in one month usually costs KSh6, 000 and there are only three doctors in the Nairobi who can manage the disease,” she says. She notes that lupus comes in different forms which are known in medical terms as flares. It could be like a headache today, tomorrow backache and every time one has to see a doctor. “If you are employed you can easily be fired because today you ask for permission to go to the hospital, another week you go, another week you go again and this makes it very hard for people to work with lupus patients,” she said.