As in the previous two series, diarists documented in written, visual or audio form their experiences, ranging from their initial diagnosis, through treatment, and including their evolution as advocates of people living with NCDs.
"I’m grateful for my wonderful team of doctors, which is led by my endocrinologist and includes a cardiologist and pulmonary specialist."
- Diarist Anita Sabidi from Jakarta, Indonesia, who lives with type 1 diabetes, cardiomyopathy and asthma
“My treatment is well-coordinated as the team are all located in the same facility and my medical records are accessible online, easing communication and coordination. Times where this was crucial included when my asthma medication conflicted with my diabetes treatment, which required adjustment of my insulin to re-balance my blood sugar.”
Sabidi, who created a visual diary, illustrates the point about her complex treatment with a photo of the many supplies she needs to treat her NCDs.
Eleven diarists from 11 countries and 3 regions participated in this new series. Before creating their Diaries, they underwent three modules of training: first about the overall project, the public narrative framework to frame their Diaries and finally, creative storytelling.
In her powerful written diary, Canadian Wendy Reaser describes how medical professionals made her feel “hopeless, worthless and beat down”. Then one day she visited a cardiologist. “What happened next would have knocked me over if I wasn’t sitting down. The cardiologist looked me in the eye and explained that my heart was enlarged because I had sleep apnea, so my lungs were lacking oxygen. I’d just started sleep apnea treatment six months before seeing him.”
“He was confident that if I continued this treatment, ‘tweaked my eating and maybe moved around just a little more’, my heart would be fine in under a year. His words saved my life. It’s interactions like these that began to restore my confidence in navigating my care journey, and my faith in the medical profession.”
The focus on healthcare providers comes at a critical time. As countries strive towards Universal Health Coverage, a skilled and motivated health workforce that can deliver care through a respectful and reciprocal relationship with people living with NCDs is an essential building block as we shift away from health systems designed around diseases towards health systems designed for people.
The NCD Diaries project was launched in 2021 as part of NCD Alliance’s Our Views, Our Voices initiative. It has four objectives:
- Amplify the voices and lived experiences of people living with NCDs to build a public narrative that puts people first and builds awareness of challenges experienced by people living with NCDs;
- Support and inspire people living with NCDs to share their lived experiences, priorities, and recommendations to raise awareness and advocate for change;
- Provide a repository of documented lived experience, highlighting the day-to-day challenges and personal realities of people living with NCDs around the world;
- Contextualise the Advocacy Agenda of People Living with NCDs (and national Advocacy Agendas where available) and humanise advocacy issues through first-hand lived experiences of NCDs and local realities to call for action on NCDs.
The NCD Diaries are possible thanks to NCD Alliance’s partnership with the Leona M. and Harry B. Helmsley Charitable Trust.
