My journey as a stroke advocate

15 Jul 2021 Stroke awareness Stroke support

Michael Uchunor, founder and Chairman of the Michael and Francisca Foundation, shares his journey over the last few years as a stroke advocate.

I started my journey as a stroke advocate after I had a stroke in 2012, at the age of 32. There was nothing like a stroke support group for me to access, but I now know that my recovery would have been easier if I had connected with such a group. A group where I could meet other stroke survivors with similar effects of stroke, to get to know and communicate with one another, share stories, challenges and inspirations, to learn about promising treatment and new research. This void gave birth to the “Michael and Francisca Foundation” which is a stroke support organisation and a place where stroke survivors and their relatives connect with one another.

I want to use my voice to raise awareness of stroke and other non-communicable diseases (NCDs). Over the past few years, my journey as a stroke advocate has seen me raising awareness and being involved in advocacy at a local, national and international level. I began by collaborating with Dr Alfred Adewale Martins, Catholic Archbishop of Lagos State. He gave me authorization to carry out a Stroke Awareness Program in all Catholic Churches in the state and this is still ongoing.

These activities led to my World Stroke Campaign Award for Individual Achievement in 2019.This Award was achieved due to my commitment to raising awareness of stroke/NCDs and developing support systems for stroke survivors in Nigeria. From then I have gone from strength to strength. I was selected as a person with lived experience to represent Nigeria at the Global NCD Alliance Conference in Sharjah UAE in 2020. I am currently a member of the Advisory Committee the NCD Alliance Our Views Our Voices initiative and I am a Steering Group member of the World Health Organization's NCD Labs. Here is Nigeria, I am one of the representatives for the NCD Alliance Nigeria in Lagos State and nationally.

While my involvement as a person with lived experience has been increasing, there is still a lot more to be done. I don’t see the level of visibility for people with lived experience of NCDs that there should be. The NCD movement, from local communities to the global collective, must meaningfully involve people living with and affected by NCDs in a whole-of-society response if we are to reach the ambitious global targets for reduction of NCD mortality. The themes outlined in the 'Nothing for Us, Without Us' report from the WHO Informal Consultation on People Living with NCDs in 2020 must inform future activities:

meaningful engagement activates agents of change who should be able to equitably influence the design of policies, programmes and practices
from talking the talk to walking the walk - more effort is required to transition from intention to action when engaging with PLWNCDs
the importance of identifying actionable, practical, tangible next steps with concrete actions

For me, still one of the most important tasks at hand is to increase the awareness in the community of the causes of NCDs and people with lived experience have an important role to play here as agents of change and empowerment. This is why the launch of a newsletter in Nigeria earlier this year for people with lived experience of NCDs is so important. As editor of the newsletter, I want to stress how it important it is to ensure that views and perspectives of people with lived experience are heard by the government and acted upon in decisions and policies that address drug affordability, the removal of discrimination and creation of job opportunities.

For more information

www.michaelfranciscafoundation.org

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(17)30339-3/fulltext

https://www.world-stroke.org/news-and-blog/blogs/ensuring-the-lived-experience-of-stroke-was-heard-at-the-global-ncd-alliance-forum

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