Cause and Affect's work with Parkinson's Disease in Ethiopia

This video is about the work of Cause and Affect in Ethiopia with elderly Parkinson's disease patients:

ADDIS ABABA, ETHIOPIA -- Due to a poor medical system in this E. African country, many elderly people that contract Parkinson's disease (which is a neurodegenerative disease caused by a slow deterioration of the nerve cells in the brain) never even know what they are suffering from. Worse still, they are often discriminated against by people that think they have been cursed by God.
Thankfully, a dynamic woman - and patient herself - has created Ethiopia's first organization to assist Parkinson's patients and create awareness about the disease for doctors and the general public. Cause & Affect recently assisted them by purchasing $860 worth of Credonil (the prescription drug treatment) to lessen the suffering of some of the patients too poor to afford the medicine. Please visit our blog to learn about other projects (Cause and Affect blog) and our website (Cause and Affect website) to make a contribution to help other worthy projects like this.

Parkinson's Disease in Uganda

Parkinson's disease (PD) is caused by the destruction of an area in the center of the brain called the substantia nigra. As the substantia nigra is destroyed dopamine, that facilitates the movement of muscles is not produced in large enough quantities. The symptoms of PD include the classic tremor or shake, muscle rigidity, slow movement and difficulty walking. There may also be problems with thinking and behavior. At the end stage dementia is common (Wikipedia). More than one third of people with PD suffer from depression and anxiety.

The cause of PD is generally unknown but PD has both genetic and environmental factors. There is increased risk from exposure to pesticides and head injuries. People with family members affected are more likely to get PD (Wikipedia).

The Worldwide Occurrence of PD paper from 1993 identifies a few papers from Africa. They show a wide diversity of prevalence from 40 per 100,000 (age adjusted figure) in a 1979 Nigerian study, contrasted with a United States study of blacks from the Mississippi in 1978 shows a prevalence of 5 times more for black people in the Mississippi region. A 1996 paper, PD in African populations of African origin: A review showed that 0.7% of neurological patients in Mulago Hospital, Uganda had PD. A 2006 paper PD in Africa: A Systematic Review of Epidemiologic and Genetic Studies concludes:

The general impression is that PD occurs less commonly in Africa than in Europe or North America. Considering that sporadic PD is predominantly a disease of the aging, differences in crude incidence and prevalence are likely explained by differences in the demographic structure of the populations. For instance, the crude prevalence of PD in Africa is lowest in western and eastern African countries where less than 4% of the population are 60 years of age or older, and life expectancy is less than 57 years. This finding is in contrast to the prevalence rates from North Africa that are similar to European populations. The study by Schoenberg and colleagues reported prevalence rates for blacks in Copiah County, Mississippi, that were fivefold higher than in Nigeria (after adjustment for age), and similar to the Caucasian populations in the same county. It remains unclear whether the lower prevalences in Africa compared to Europe and the United States are solely due to different age structures, different methodologies, and lower survival, or whether they reflect truly different incidences...

The 2014 World Health Rankings, PD site gives an annual death rate of 3.25 per 100,000 attributed to PD and ranks Uganda in 33rd place compared to other countries. This compares with the United States ranking of 4th with a death rate of 4.51 per 100,000.

A 2015 study, Knowledge and Attitudes of Parkinson's Disease in Rural and Urban Mukono District, Uganda: A Cross-Sectional, Community-Based Study found the following:

A key finding from this survey was that 17% of participants believed that PD was contagious while 28% believed that PD is a form of insanity. It might be expected that these attitudes contribute to stigma associated with PD. This is similar to earlier work which reported that half of the respondents saw stigma attached to this disease. These stigmatizing misconceptions make it likely that individuals with PD might conceal their symptoms and delay care seeking, making their situation even more challenging. Designing awareness campaigns for increasing knowledge and changing attitudes within communities would help in increasing social support for PD sufferers in our settings. This study emphasizes the need for adequate education and imparting accurate knowledge to communities. In an earlier study, participants with stigma were more likely to have negative attitudes to people with PD. Stigma leads to discrimination which may be associated with depression and poorer adjustment among those with the stigmatized condition. We did not find any significant differences between rural and urban communities regarding stigma. However, some studies have reported that stigma was higher in rural areas than urban areas.

The study concludes:

PD, at least in its more severe form, is readily recognized by the community in Uganda; however, knowledge about what causes PD is limited and stigmatizing misconceptions are unfortunately relatively common. Awareness and education programs on PD have an important role in improving accurate understanding of illness and in reducing stigma. This may ultimately affect care seeking and health outcomes among those with PD. Further studies are needed to understand how knowledge and attitudes may influence care seeking and access for individuals with PD in Sub-Saharan Africa.

How does all this theory feed into everyday life? One woman’s pain of living with Parkinson’s disease for 12 years tells the story of Matilda Nakkazi, 53, a mother of 10: 

She lives in Ggangu, in Makindye Sub County in Wakiso District.
For the past 12 years, however, she has been battling Parkinson’s disease, a neurological syndrome which characterised by constant shaking of the thumbs and fingers, and constant rigid muscles.
It is a disorder of the central nervous system, and this disease normally affects people who are over the age of 50. Nakkazi says she experiences persistent shaking, rigidity, slowness of movement and difficulty with walking.
Before a diagnosis was carried out at Mulago hospital, Nakkazi thought she had been bewitched since doctors had initially failed to diagnose her condition. “Before I came to Mulago hospital, I was using herbal medicine which did not work. Now I have got some relief,”explains Nakkazi. She is currently undergoing palliative care, which she says has relieved her of pain.
Dr Simon Peter Eyoku from Mulago hospital explains that Parkinson’s disease is a rare disease whose specific cause is not exactly known, although a few cases have been attributed to genetic factors. In Uganda, because it is a rare disease, it is not known how many people suffer from the condition.
Besides genetics, it is said that environmental factors also play a role in the development of Parkinson’s.
Dr Eyoku reveals that although there is no cure for Parkinson’s disease, medications, surgery and palliative care can offer relief from some of the symptoms that are commonly associated with the condition.
Levodopa drug: For some patients, a drug called Levodopa can be used to manage symptoms, and in Uganda, it has so far been the most common drug used. Dr Eyoku adds that surgery is no longer commonly used in managing Parkinson’s disease.
Prevention: Dr Eyoku however explains that Parkinson’s disease can be prevented if the affected persons drink caffeine, commonly found it coffee, tea and cola. Green tea also may reduce the risk of developing Parkinson’s disease.
Dr Eyoku further explains that consuming foods rich in flavonoids, such as berries, apples, orange juice and red wine are also known to reduce the risk of developing Parkinson’s disease by 35 per cent.
Research has also linked the development of Parkinson’s disease reduced oestrogen levels.
This may explain why menopausal women who do not take hormone replacement therapy are more likely to develop Parkinson’s disease.
Nakkazi is currently receiving treatment at Mulago hospital, and says she has kept a strong faith in God, and believes that one day she will be healed of her condition.
For now she engages in regular exercise routines to keep fit and healthy.

Once again the prejudice and stigma about a disease have dramatic effects on the quality of life of the person with PD. However, proper education is the way to overcome the barriers of prejudice and stigma. There is little doubt that PD is a disease of old age. As the population of the elderly increases, as life expectancy increases in Uganda, it would be expected that the prevalence of PD will begin to match that of the United States.

For more information see Africa Parkinson's Disease Foundation on Facebook or The Parkinson Association South Africa website.