Tuesday, September 21, 2021

Parkinson's Is Not Witchcraft, Q & A With Uganda's Hannington Kabugo

                 Harrington Kabugo with Miriam "A patient who was treated like my mom she was 
              in her bedroom for 10 years not getting out I went and got her and brought her in my house"

 Hannington Kabugo, 36 became a Parkinson's advocate after his mother died with Parkinson's disease over a decade ago. A resident of Uganda, where he lives outside of the capital of Kampala he made it his mission to take on Parkinson's Disease after seeing how his mother was stigmatized when she developed PD. "Apart from PD advocacy that I do with a lot of passion and love in memory of my mom who suffered because she had Parkinson's, I am a food scientist and work as a health inspector in the capital city authority of Uganda as a food and beverage supervisor." As the lone PD advocate in a country with an estimated population of over 45 million, Hannington js  pioneering the struggle against PD in the developing World. This interview was conducted via the Messenger app, It has been lightly edited for clarity.

Q: How long have you been a Parkinson's advocate?

A: Since 2013 those are 8 years now.

Q: Are there reliable numbers documenting how many people with Parkinson's there are in Uganda? What is your best estimate of the size of the PD population there?

A: There no reliable numbers on the number of Parkinson's patients apparently because I am the only Parkinson's advocate so because I am just an individual it's really hard for me to get all the numbers because it needs funds I don't have. However through the organization I founded Parkinson's si buko Uganda   (Parkinson's Is Not Witchcraft Uganda)I have managed to locate 120 patients and these are the ones in our care and training. However we could have thousands because those numbers only come from two districts only out of the 135 districts that make up Uganda.

Q:  How is PD treated medically in Uganda? Are medications available, Carbidopa/levodopa?  Neurologists to provide expert care?
A: Because of ignorance about the disease and people thinking they are cursed or bewitched a lot of people will shy away with the disease becoming a serious problem to them. Medication is available but affordability is very very low we have only 6 neurologist and only one is a bit available in government hospitals. We have only one neurologist in Uganda to help our PD patients that's a very serious problem.

Q: What is the greatest area of challenge/need facing your organization?
A: The greatest area of need is medication, exercise kits and literature for our training sessions of patients medical workers and caregivers. One challenge is ignorance of the disease. My mom was called a witch and people thought she was cursed so it's the challenge we are dealing with to let people know that PD is a science, not witchcraft or a curse and that's where our main emphasis is to dispel that myth. We also have a problem of literature to help us teach the medical team at health centers and patients plus their caregivers another big challenge is medication is scarce because funds. Uganda being a third world country there is a lot of poverty so affordability of medication.

Q: So in addition to the common misconceptions about Parkinson's Disease, PD is seen by many in Uganda as punishment of the patient for practicing witchcraft. How do you deal with this perception?

A: I deal with this perception of PD in Uganda through training to let people know PD isn't witchcraft or a curse.

Q:  Is it only Parkinson's that is seen as punishment for witchcraft, or are other diseases also perceived that way?

A: No it's not only PD Diseases like epilepsy and HIV are seen that way too, among other diseases, so sensitization is very important.

Q: Are there other African countries where people regard Parkinson's as punishment?

A: Yes they are many other African countries with the same ideology about Parkinson's and it's the reason we founded Parkinson's Africa  together with Omotola Thomas, a lady with whom I work. She's an African Nigerian who stays in U.K.

Q: How can the world-wide Parkinson's community, world-wide, help?

A: Worldwide Parkinson's community can help with literature exercise lessons and medication for the many patients we have and even more we can get. We need to have lessons with the international doctors and neurologist on how best we can diagnose PD patients.

You can see an interview with Hannington Kabugo by Parkinson's Avengers describing what his family went through in Uganda when his mother developed Parkison's Disease here

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