Unbroken: The Noma Survivor Changing Global Health, Fidel Strub

In this HLTH Forward episode, I spoke with Fidel Strub, and I felt the kind of strength and hope that transforms pain into power. He isn’t just a survivor — he is living proof that with knowledge, compassion, and action, tragedy can become a force for change. According to the World Health Organization, Noma — the devastating, gangrenous disease that ravages the mouths and faces of malnourished children — once afflicted an estimated 140,000 individuals per year globally, with a case-fatality rate as high as 90%. 

Survivors often endure severe disfigurement, lifelong difficulties eating, speaking, or breathing, and face social isolation — yet many never receive timely treatment, because far too many healthcare workers don’t recognize Noma early enough. 

Fidel shared that surviving Noma gave him a “second chance at life.” But survival alone wasn’t enough — dignity, acceptance, and opportunity were what truly mattered. As a co-founder of the survivor-led advocacy group Elysium, he and his fellow survivors turned personal trauma into a public mission. Their campaign helped ensure that in 2023, Noma was finally added to the WHO’s official list of neglected tropical diseases. This milestone opens the door to funding, research, education, and treatment.

Now he champions early detection, basic antibiotic treatment, and reconstructive surgery — but most of all, he fights for the right of survivors to be seen as people deserving of dignity, not pity.

And Noma is far from an isolated tragedy. Across the globe, millions suffer from rare diseases — deeply misunderstood, under diagnosed, and grossly under-resourced. Experts estimate there are more than 7,000 rare diseases worldwide, affecting up to 3.5–5.9% of the global population — that’s hundreds of millions of people. 

 Many begin in childhood: around 70 % of rare diseases are genetic, and a significant proportion manifest before adulthood. Yet over 95% of these conditions lack an approved treatment, reflecting a shocking disparity between need and support. 

At its core, Fidel’s story — and the broader rare-disease crisis — challenges us to expand our vision of healthcare and humanity. It’s not just about surviving illnesses; it’s about ensuring dignity, inclusion, and opportunity for every human being, regardless of where they were born or how rare their condition.