A Brief History

of the Parkinson Patients Support Organization Ethiopia

It was in May 2011 that the Parkinson Patients Association was established in Addis Ababa, Ethiopia with the aim of catering to the unmet needs of Parkinson Patients in Ethiopia. Prior to the establishment of PPSO-E there was no organization available that dealt with issues related to Parkinson Disease (PD).

In fact PPSO-E is the only organization that deals with Parkinson Disease in the country and second in Africa. Prior to the establishment of the organization, very little is known about Parkinson Disease (PD) outside medical centers. The fact that in Ethiopia, there was no existing data or sufficient information about Parkinson Disease, its distribution and number of patients at the time made, PD, a disease that exists in plain sight because of the lack of awareness on it. No study or research has been made or conducted either by medical professionals or outside of the medical profession that shows the spread of the disease, its cause and social background of patients. Because of lack of existing data and information, there was also very limited awareness and understanding about the disease among the general public.

This coupled with the stigma associated with the disease had forced some patients to hide from public causing them not to seek care and treatment for Parkinson disease. The attempt made by patients to hide due to the problem stigma is also believed to have contributed to the low level of awareness and understanding of the diseases and its treatment by the public. The public in general considers PD as a nerve problem. In the rural areas and among low income groups of the society it is sometimes considered as a disease caused by evil spirits.

Most studies on PD show that it mainly affects persons over the age of 60 years but 10-15% of patients are of the age of 20-40 years. PD is considered as one of the aging problems in a society. There is no cure for PD except medication.

Experiences from elsewhere indicate that there are growing numbers of Parkinson cases as demographic changes and transitions take place it is expected that Ethiopia too would experience these trends and early awareness on Parkinson Disease would not only help in developing proper treatment but also equip us all on how to deal with it socially as well.

The problem of Parkinson patients is varied and diversified. Parkinson Disease is no more a medical or health problem only.

It is also becoming a social and economical problem as well. The disease also affects the psychological and social well being of patients.

When the disease reaches its advanced stage patients are forced to depend fully on their care takers and medicines; and this dependency affects their income and working capacity and it further impoverishes them. 

Membership Experience

At the start of our association, the fear of stigmatization, lack of awareness, and social and economic problems had prevented patients from coming forward and registering, but due to our effort in raising awareness the association has been able to register several new patients as members.  To register, please send an email to parkinsonassociation11@gmail.com

Patient to Patient Interaction (Experience Sharing)

Our association brings members together to share their experience with each other.  Our members has express their appreciation for having a platform to share their experience of living with the disease with each other.

The first meeting of the  founders of PPA-E at Ghione Hotel 2011 discussion for the establishment of the association