Mycetoma Behind the Lens

A Multimedia Advocacy Project

 

mycetoma

Background

Mycetoma, a globally neglected disease, exacts a heavy toll on the most vulnerable populations residing in impoverished, remote, and underprivileged communities. Its prevalence in these regions underscores the stark reality that mycetoma primarily afflicts the poorest of the poor. The consequences of this insidious ailment extend far beyond the confines of individual health, inflicting serious and devastating medical and socio-economic impacts on patients, their families, entire communities, and the already strained health systems within endemic regions.

The burden of mycetoma is not merely confined to physical suffering; it permeates every facet of life in these marginalised areas. Patients grappling with mycetoma not only endure the pain and debilitation wrought by the disease but also face social stigma, diminished economic opportunities, and a heightened susceptibility to further health disparities. The long-lasting effects ripple through families, impairing their ability to thrive, perpetuating a cycle of poverty, and exacerbating the existing challenges faced by communities already grappling with limited resources.

The repercussions extend to the broader health infrastructure, placing additional strain on already overburdened systems in regions where mycetoma is endemic. In essence, mycetoma’s profound impact underscores the urgent need for increased attention, resources, and concerted efforts to address the unique challenges posed by this neglected disease and alleviate the suffering of those who bear its brunt in the world’s most underserved communities.

Objective:

“Mycetoma Behind the Lens” seeks to make a lasting impact by blending emotive visuals with educational initiatives. The project aims to raise awareness and advocate for mycetoma prevention, early detection, and proper management through multimedia storytelling, including photography and videography.

By illuminating the challenges faced by those with mycetoma, the project aims to cultivate understanding, empathy, and community support while emphasising the significance of community engagement and advocating for improved healthcare practices and policies.

Components of the Project:

 Photography Exhibition:

  • Curate a collection of compelling photographs that capture the personal stories, struggles, and resilience of individuals living with mycetoma.
  • Collaborate with professional photographers and affected individuals to create a visually impactful exhibition.
  • The exhibition will be hosted in public spaces, healthcare facilities, and educational institutions to reach a diverse audience.

Documentary Film:

  • Produce a documentary film that explores the journey of mycetoma patients, from diagnosis to treatment and beyond.
  • Include interviews with healthcare professionals, researchers, and affected individuals to provide a comprehensive understanding of the disease.
  • Aim to showcase the impact of mycetoma on both individuals and communities.

Awareness Campaign on Social Media:

  • Develop a social media campaign using Instagram, X, and Facebook.
  • Share personal stories, infographics, and short video clips to engage a wider audience and encourage them to participate in the advocacy efforts.
  • Utilise relevant hashtags to increase visibility and create a sense of community among those affected by mycetoma.

Educational Workshops and Seminars:

  • Organise workshops and seminars in collaboration with healthcare professionals, NGOs, and community leaders.
  • Provide information on mycetoma, its causes, symptoms, and available treatments.
  • Emphasise the importance of early detection and dispel myths and misconceptions surrounding the disease.

Collaboration with Healthcare Providers:

  • Partner with local healthcare providers to offer free or discounted screenings for mycetoma in high-risk communities.
  • Provide informational materials in healthcare settings to educate both patients and healthcare professionals about mycetoma.

Online Resources and Website:

  • Develop a dedicated website with resources, articles, and links to support groups for individuals affected by mycetoma.
  • Regularly update the website with new information, research findings, and success stories.

Measuring Impact:

  • Track social media engagement, website traffic, and event attendance to measure the project’s reach.
  • Collect feedback from participants and the community to assess changes in knowledge and attitudes toward mycetoma.
  • Monitor the number of individuals seeking early diagnosis and treatment after exposure to project materials.

 Exhibition & Presentations

  • Online site
  • At different sites, e.g, WHO, EMRO, international meetings, etc

  Media material available at:

  • The Mycetoma Research Center
  • DNDi Genvea, Nairobi, USA
  • Eisai
  • Social media