It has claimed the lives of renowned and great personalities including Richard Pankhurst, an expert in Ethiopian history and the legendary Boxer and heavyweight champion Mohamed Ali and others, but Parkinson’s disease is little known among the entire Ethiopian population.
From the famous singer and songwriter Johnny Cash to his holiness Pope John Paul II, the second-longest serving pope in history, Parkinson’s has poked its grotesque face in many families. In Ethiopia, the disease is either known as a curse called down or unknown to the public. Most the patients in the country are hidden form possible onlookers as their family felt ashamed to expose them. In fact, surprisingly enough it is stunning that a country which gives prevention first than treatment has not come up with research conducted on the disease so far.
While ‘International Parkinson’s Day’ will be marked for 21st time globally, it has only been six years since the day started to be observed in Ethiopia. This is nothing but an indication on how the disease is neglected. One may argue that the disease’s burden is far from other pressing diseases such as blood pressure and cancer but one also cannot downplay the disease while there was not any single study conducted on the status and magnitude of Parkinson’s.
There is no clear figure about the number of patients diagnosed with Parkinson’s in Ethiopia. But most of the people are thought to be in every nooks and crannies of churches or other places as Parkinson’s disease is often mistaken for evil embodiment. Being treated as not public burden, the only active organization working on helping the patients is Parkinson’s Patients Association-Ethiopia.
There is ill-conceived attitude that Parkinson’s is a curse of God but it is scientifically wrong and unfounded. But Parkinson’s disease is a progressive disorder of the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while a tremor may be the most well-known sign of Parkinson’s disease, the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson’s disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as your condition progresses over time. Although Parkinson’s disease can’t be cured, medications may markedly improve your symptoms. In occasional cases, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.
Recently the organization has organized a press conference in cooperation with the ministries of Health Labour and Social Affairs
Flanked by her caregivers, founder of the Kibre association can barley walk. She set up the organization after she experienced a lot of challenges by the diseases. I came to establish the association seeing that how much patients of the disease suffer.
Although she wanted to be a role model for those suffering from the disease, Kibrua, the founder could not conceal her feeling that how challenging it is to live with the Parkinson’s.
As the saying goes add an insult to an injury exorbitant prices of drugs and shortage of supply have made life difficult for those suffering from the diseases. “Word can not tell the sufferings and pains that a Parkinson’s patients feel. Once they are diagnosed with the disease, the whole family is to became poor and get into trouble,” hence Kibrua said the government should do much to create awareness on the people and help patients.
There are signs of increased prevalence of the disease over the past two decades as it secured much attention in comparison to other non-communicable diseases.
The other major challenge is that due to financial constraints the Association has confined its activities to the capital city only. But there might be many Parkinson’s patients who live in the countryside. Besides, pharmaceutical products are also beyond the economic capacity of patients and are hence not accessible, she added.
Adequate fund is not coming from donors, the organization survives from the minuscule fund it gets from one donor. The disease get little attention from the government. The patients are treated badly some left out home and thrown to the streets. Once you diagnosed with the incurable disease, you are physically unfit to execute your jobs, then patients are dependent. “Biting lips in sympathy is not enough, we have to do something,” said Kibrua.
The organization is now home to 360 men and women Parkinson’s patients of which only 40 have access to drugs. Nevertheless, they were left unsatisfied that most are too weak and yet have to buy their medicine themselves and live independently, she explained.
Commemorating the day helps to raise awareness among members of the Association through exchanging information about the disease’s symptoms, get counselling service one another, she added.
Haregewine Assefa, an actress and Ambassador of the little know organization broke into tears and could not utter a word when she spoke of the disease. She was smote by a deep sympathy and an excoriating pain after seeing. You have no idea how it feels to see how much the patients are suffering. Worst of all, these people are stigmatized by the people
Most cases occur among people over the wrong side of 60, but some people develop the disease much earlier in life, as was the case with Kibrua who was diagnosed at age 31. Although Parkinson’s disease can’t be cured, medications may markedly improve patients’ symptoms.
Dr. Mussie Gebre-Micheal Disease Prevention and Control Senior Officer at the Ministry of Health for his part said that there is not a researched fact that Parkinson’s is a major public health disease and the ministry has only limited effort in the eradication of the disease as it thrown its full weight to other chronic disease affecting millions of people.
It is up to the Institute of Public Health to conduct study and show the magnitude of the disease but the ministry would strength its effort and work with partners to eradicate the disease, he added. To sum up, as the number of patients increasing, it needs the contribution of everyone to eradicate the disease and help the patients.
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