One elderly woman visited 16 different doctors to get a diagnosis. At 78, she had back pains, a tremor and had begun drooling.
Other patients were only diagnosed with one foot in the grave. For years, their symptoms had been dismissed as a ‘normal’ part of ageing.
Such is the struggle of people living with Parkinson’s disease in Kenya.
Researchers say it is so poorly understood that one elderly patient saw medics ‘Googling’ her symptoms and the medication to give.
Five researchers who followed 55 Kenyans living with Parkinson’s disease for 10 months say the ignorance about this disease, even among health professionals, is disappointing.
Their findings were published last week in the Social Science & Medicine journal, owned by Elsevier.
“The diagnostic journeys of our study participants were typically long, convoluted and confusing. There often followed an extended period of diagnostic uncertainty, misdiagnosis and even 'undiagnosis', where a diagnostic decision was reversed,” they said.
Parkinson’s disease is progressive and not curable. But early diagnosis and effective treatment can delay the onset of severe symptoms, thereby increasing both length and quality of life for patients and reducing the burden of care on family members.
Symptoms include trembling, stiffness of the limbs, slowness of movement and impaired balance, often seen as part of ageing.
Most patients develop the disease at about age 60 and, with the rising life expectancy in Kenya, the prevalence will increase.
The researchers followed the patients, 23 family members and 22 medics from public and private clinics, in Nairobi and Mombasa, between 2018 and 2019 to understand the experience of diagnosis among patients in Kenya.
The researchers are from the University of Nairobi, Aga Khan University Hospital, and UK universities Durham and Newcastle as well as the Northumbria Healthcare NHS Foundation Trust.
Prevalence of Parkinson's in Kenya rose 40 per cent between 1990 and 2016, the year that cases peaked at about 8,065 people, according to a separate estimate in the Lancet.
However, authors of the 2018-2019 study said the rampant lack of diagnostic capacity means almost all these counts are under-estimates.
They called for increased awareness in Kenya to ensure timely diagnosis and – if available – the commencement of appropriate treatment.
Kenyatta National Hospital is the only public facility that holds a public neurology clinic. Neurologists interviewed at KNH said they were overwhelmed by the high number of patients seeking help for different neurological problems.
“Obtaining a diagnosis required not only dogged persistence [by patients], but also having sufficient funds for multiple consultations, scans, examinations and tests, most of which were available only in private-sector facilities,” the study says.
Some doctors at KNH also said they saw no point in telling some patients they have Parkinson’s.
“It's not going to be a curable disease, you're going to get worse over time and you may get all these complications,” one doctor said.
There are no objective screening tests that indicate one has Parkinson’s.
However, two of these four main symptoms must be present over a period of time for a PD diagnosis to be made.
These are shaking (in hands, arms, legs, jaw, or head), slowness of movement, stiffness or rigidity of the arms, legs or trunk; and trouble with balance and possible falls.
The disease is caused by the death of nerve cells in the brain, which control the production of a chemical that helps control body movement.
(edited by o. owino)
