Lived experience is the key ingredient for an effective NCD response, no matter what the local context may be. This message comes across loud and clear in the sixth and latest series of the NCD Diaries: Leadership from the lived experience. The series just launched with eight powerful stories of people living with NCDs or their carers, and how they turned disease, disability, and loss into a source of incredible strength and motivation to improve the lives of others facing obstacles to NCD care.

“After losing my infant daughter to a treatable heart disease condition, I also live with multiple NCDs while caring for my 12 year old daughter with fibromyalgia.[...] I seek to support vulnerable families and amplify affected communities' voices in decision-making processes, driving change to ensure better healthcare outcomes for those in need.”
– Tendai Moyo, lived experience of multiple chronic conditions, Zimbabwe

The Diarists in this series come from diverse backgrounds but they are all driving change, reaching out into their own communities to support people who are being left behind or let down by their health systems, and providing guidance, help in accessing care, and understanding. They use their experience and insight as tools for advocacy, calling on governments to act on NCDs.

“I share my story because I believe stroke survivors deserve to be seen, heard, and supported. Too often, we face stigma, isolation, and inadequate care. By speaking out, I hope to raise awareness, offer hope, and advocate for improved support and inclusion for stroke survivors across Nigeria.”
– Michael Uchunor, lived experience of cardiovascular disease (CVD), Nigeria

Watch Michael's video diary

This impactful series demonstrates the true value of lived experience in the NCD response. Many people living with NCDs and their carers have faced stigma and discrimination, have struggled to overcome barriers to accessing care, have had to cope with care that just wasn’t good enough. They understand the difficulties that can accompany an NCD, and need to be heard when decisions are made or actions taken that affect their health.

“People do not die from cancer alone. They die from late detection, prohibitive out-of-pocket costs, and unequal access to care.[...] We, the people who lived through cancer, know what is at stake. We have seen the gaps. We know the solutions. Now, we continue raising our voices to be involved in ensuring cancer care equity.”
– Emerito Rojas Lived experience of cancer, Philippines

Watch Emerito's video diary

Don’t miss these eight powerful stories, and how the Diarists have answered one shared call to lead, to create a healthier and more equitable world for everyone everywhere. The diaries for this series include three written, one audio, and four video (a new diary format!) with Diarists from the Philippines, the UK, Ghana, Nigeria, Palestine, Zimbabwe and the Maldives.

We will be launching the diaries one-by-one over the coming weeks until the Global Week for Action on NCDs (18-25 September) and the UN High-Level Meeting on NCDs (25 September). The first Diarist featured is Emerito Rojas from the Philippines, whose cancer journey transformed him into a dedicated health advocate with a deep sense of purpose.

 

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NCD Diaries Series 6 "Leadership from the lived experience"