Home Vulnerable group Stop stigmatising Parkinson’s disease patients, NGOs tell Nigerians

Stop stigmatising Parkinson’s disease patients, NGOs tell Nigerians

by Inclusive News Network

By Emmanuel Ojo

The Adewunmi Desalu Parkinson’s Foundation, in conjunction with Parkinson’s Africa, on Saturday, undertook an awareness walk, tagged ‘Move4Parkinsons’, to sensitise Nigerians to Parkinson’s disease with a view to discouraging the stigmatisation of patients.

The 45-minute walk, with the theme, “We cannot stop the shakes but we can stop the stigma,” took place at Alaka Estate in Surulere area of Lagos State.

The organisers said it was in honour of a former British Army officer, Colonel Guy Deacon, who was diagnosed with Parkinson’s disease 11 years ago and is currently driving through Africa to create awareness about the disease.

The awareness walk was followed by “a village meeting” where the conveners, patients and caregivers shared their experiences.

The Founder and Director of Parkinson’s Africa, Omotola Thomas, who revealed she was diagnosed with Parkinson’s disease at 35, said tremors and shakes were usually the first signs, in addition to many other unseen issues the patient battles.

She said, “Some people ask me why I do this and come out publicly because my hands are shaking, I tell them that I don’t have to be shy.

“There are cases of people with tremors and their partners don’t want to go out with them because they have tremors and are shaking, and this is one thing we are trying to tell people to stop (the stigmatisation). We don’t want to be isolated. We shouldn’t let that impact our lives in that manner.”

While encouraging Parkinson’s disease patients to stand up for themselves, Thomas added, “You have one party that is causing the stigmatisation and on the other hand, you have the person being stigmatised. I have to accept to be stigmatised to allow it to have an effect on me.

“The message I have for those being stigmatised is that, you have the power not to let it get to you. You have the ultimate say. You have the power not to allow it to affect you. But then, my message to the general community is that Parkinson’s disease is a medical condition. It is a treatable issue. Patients don’t need to be stigmatised and isolated.”

On her part, the Chair, Board of Trustees for Adewunmi Desalu Parkinson’s Foundation, Morin Desalu, harped on the need for early diagnosis and treatment.

She said, “First is to know that Parkinson’s disease is real and there are lots of people around us who may have shakes and tremors and pretend that they are well.”

“One of the things to do when you are sick is to fight; it’s good that they are fighting but not in ignorance. When you fight in ignorance, you lose. But you should seek help because the sooner you start treating it, the slower the progression of the disease. As you know, most diseases come in stages, so, if you can catch it at the beginning, you can shut it down.”

Desalu said to fight stigmatisation, Parkinson’s disease patients should be ready to educate the public that they are not suffering from “witchcraft and that it’s not a spiritual problem but a neuro-degenerative disease.”

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