It is 10am and Gift Lamaro is seated on the verandah of their grass-thatched hut in Gulu district. She looks pale and her eyes are yellow. The home-made passion fruit juice, in a transparent plastic cup beside her, looks untouched.
The five-year-old looks on as her age-mates loudly play hopscotch, a children’s game in which each child hops, by turn, into and over squares marked on the ground to retrieve a marker thrown into one of the squares.
Under a mango tree, about 20 metres away, Lamaro’s mother, Faith Amony, is snoring away, seemingly unperturbed by noise from the little girls playing.
Amony is only able to steal a few minutes of sleep during the day, having had three sleepless nights with her child who is battling a sickle cell crisis.
When she wakes up, Amony laments about the long nights she has to endure in order to help her daughter bear the pain caused by the disease. And yet the 28-year-old mother of three is reluctant to take her girl to a medical facility.
“I don’t want to take her to the hospital because they will give her painkillers which I have at home,” she says.
Amony’s first child from her maiden marriage doesn’t have sickle cell anaemia, but both girls with her second husband are suffering from the disease. Visibly devastated, Amony is convinced that since her child with her first husband is sickle cell-free, her second husband is to blame for the predicament of her two other children. Despite her pain, she is comforted by the fact that her husband has not abandoned her.
But it is not the case with her neighbour, 30-year-old Peace Akello, whose nine-year-old son is battling the same illness. Akello’s husband married another woman after their son, Jolly Opiyo, was diagnosed with sickle cell disease at three years.
“Sometimes I wish I had the power to transfer the disease to myself. I wish I was the one who was ill. Then maybe I would have the strength to bear the pain,” says Akello.
SICKLE CELL ANAEMIA
Sickle cell anaemia, also referred to as sickle cell disease, is a collection of red blood cell disorders. The cells bend to resemble a sickle, instead of the round appearance of healthy red blood cells. Anaemia is one of the most common symptoms of sickle cell disease. One can get this generic disease when both parents carry the sickle cell trait.
In Uganda, at least 13 per cent of the population has a sickle cell trait. In northern Uganda, the prevalence rate of SCD stands at 18.6 per cent, the highest in the country. This is according to a 2014 survey done by the ministry of health, with support from Makerere University’s college of health sciences and Cincinnati children’s hospital.
Patients who have sickle cell disease experience frequent strokes, chest pain, difficulty in breathing, lack of adequate blood flow to the liver and spleen, and increased risk of infection.
In children with sickle cell disease, the red blood cell count is lower than normal because sickled-cells usually die after 10 to 20 days, in contrast to 120 days for normal red blood cells.
Sickle cell management is geared towards achieving relief of pain, prevention of infections, and preventing complications, as well as reducing the number of sickle cell crises.
For the last eight years, Akello has had uncountable sleepless nights, and has been a regular at St Mary’s hospital Lacor, where her son Opiyo gets treatment whenever he is in a crisis. A crisis is a painful episode that occurs in people who have sickle cell anaemia. It happens when sickle-shaped red blood cells block blood vessels, causing unbearable pain since the body is deprived of oxygen supply.
“This sickness is both financially and emotionally draining. I wish scientists could get a cheaper cure,” Akello says.
The agony that Opiyo goes through forced his mother to try out herbal medicine. Part of her conviction to try herbal medicine was motivated by the presence of several mushrooming outlets in Gulu that sell herbs to manage different lifelong ailments.
“I heard a medical personnel talking over the radio, about some herbal medicine used in managing sickle cell, and decided to give it a try. Six months since I started giving my child herbal Jena SM once a week, he has not had any crisis”, Akello says. Before deployment of herbs, Opio would get attacks at least once in two months.
“I have even stopped giving him the daily prophylaxis of folic acid and penicillin tablets recommended by doctors,” she adds.
Despite the fact that her son seems stable, Akello can’t help but think this might all be temporary. Akello is one of the many parents who are slowly embracing the use of herbal medicine to manage sickle cell anaemia in their children.
Chance Lanyero, a pharmacy technician at Alternative Community Health Care, one of the outlets dealing in herbal medicine in Gulu, says the outlet receives a minimum of 20 clients that come to buy herbs to manage sickle cell every month. According to Lanyero, most of the patients are referred by doctors at Gulu regional referral hospital.
Dr Alice Lamwaka, a pharmacist at the faculty of medicine at Gulu University, says certain herbs are good in managing sickle cell because they have anti-sickling effects which help in reducing pain. She says there are herbs that a person with sickle cell can use such as hibiscus, chilli (cayenne pepper), aloe vera and cloves, to reduce pain and boost immunity.
“Hibiscus is a healthy drink which is very rich in vitamins and minerals. And patients with any other chronic illness are also recommended to take it,” Dr Lamwaka says.
According to Lamwaka, aloe vera can manage more than 200 ailments, including sickle cell, because it has strong anti-malarial and anti-sickling effects.
“Chilli itself (any type for that matter) improves the immune system. It treats infections, because it has anti-bacterial properties, it is an anti-inflammatory, a painkiller and facilitates blood flow. In case of pain in the legs or fingers, get liquid chilli in the supermarket and massage with the affected area,” Lamwaka advises.
The state minister for primary health care, Dr Joyce Kaducu, says in West Africa, especially Nigeria, and other developing countries, traditional/herbal intervention is used to manage symptoms and limit the number of crises.
“Medicinal plants have been used in the treatment of painful crises associated with sickle cell disease, especially among the lower socio-economic class who cannot afford the high cost of Western medicine,” Dr Kaducu, a pediatrician, says.
A number of clinical studies show that there are many natural treatments that can improve the health of people with sickle cell disease. Researchers from the National Institute for Pharmaceutical Research and Development in Nigeria concluded that a combination of several herbal extracts could provide a possible sickle cell anaemia treatment.
Nicosan, also called Niprisan, was given to 30 patients with sickle cell anaemia. During the one-year testing period for the medication, 73 per cent of the patients did not have a sickle cell-related health crisis, and 27 per cent had fewer severe sickle cell anaemia symptoms.
In spite of the benefits of herbal medicine in reducing painful episodes in sickle cell, experts advise patients against taking herbal medicine alongside conventional medicine.
Dr Kaducu says scientific studies concerning the use of herbal medicine are still ongoing. “Therefore, the use of herbal medicine for treatment of sickle cell disease may lead to further damage to the body, since the potency and the efficacy has not been proved scientifically, Dr Kaducu says.
On the other hand, Dr Lamwaka says there is no standard dose for herbal medicine; so, patients might under- or over-dose.
“Besides, there are cases of adulteration of especially packed herbs. For instance, these herbalists who claim to cure HIV/Aids; when you take their herbs to the laboratory, you find that there are components of ARVs added,” Lamwaka says.
She, therefore, advises that patients who want to use herbs should get the natural ones from their gardens or backyards and prepare them themselves. Lamwaka says this ensures that you take the herbs in their pure natural form, without any preservatives, or risks of adulteration.
For now, it remains debatable whether herbs can be used to effectively manage crises in people with sickle cell anaemia. So far, the only known cure for the life-long disease is bone marrow transplant, an expensive venture.