In her fourth year at university in Addis Ababa, Ethiopia, Fasika Teferra was on her way to becoming a doctor when the pain started.
When she finally went for a colonoscopy eight months later, she was hoping for a simple lesion to be found. Instead, the camera was showing a more serious disease and, as a medical student, she didn’t need it explained.
“I was dying to put a name to the pain I was feeling because knowing was the big first step to finding the cure,” she says. “I was awake throughout the procedure and my heart just sank as the scope got to the place of the disease and I saw a typical Crohn’s disease (CD) appearance.”
The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.
NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80% are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.
NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.
Investment in tackling these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.
In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.
'A common condition' is a new Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.
Tracy McVeigh, editor
Fasika, 27, was initially in denial because “we were taught that inflammatory bowel disease (IBD) was almost nonexistent in developing countries”. She went through what she says was an “ugly cycle of pretending to be happy and healthy in front of everyone and crying in pain at night”, and thought about giving up medical school. But learning that there were others, and other doctors, in Ethiopia living with IBD became a turning point for her.
“I was so amazed because for months I thought I was the only case in the country,” she says. “So I said to myself, if they can do it, I can too. Knowing that there are Ethiopian IBD patients leading a professional life motivated me to learn about my condition and I went on the hunt to find these people online.”
A US Facebook group introduced her to others living with IBD, but she says she “never really fitted in”, so in 2020, two months before graduation, Fasika established her own support group, the charitable organisation Crohn’s & Colitis Ethiopia. The exact cause of IBD isn’t known, it’s a lifelong condition with no cure, making support networks for those who have to learn to live with the condition especially vital.
Fasika says the true scale of the prevalence of IBD in Ethiopia is unknown, as the last study was done in the 1990s.
“It is crucial that people understand the symptoms and get diagnosed early because early diagnosis means early interventions,” she says.
Patient’s with Crohn’s often suffer abdominal pain and other debilitating symptoms and complications such as fistulas and strictures. It has been labelled a “lifestyle” disease of industrialised countries, according to Crohn’s Disease Among the Poorest Billion, a study focusing on low and lower-middle income countries (LLMICs) published in 2021.
Ruma Rajbhandari, a Harvard assistant professor and lead researcher on the report, says there appears to be more Crohn’s disease in Ethiopia than at first thought.
“Ethiopia had virtually no published data on Crohn’s disease but based on our survey, which included eight Ethiopian gastroenterologists, an increasing number of patients are being diagnosed,” she says.
The findings of that survey show that across Africa, the highest numbers of Crohn’s patients were reported in Ethiopia and Tunisia.
Rajbhandari says researchers found “very few gastroenterologists – less than 20” for Ethiopia, which has a population of more than 115 million.
“The biggest challenges to Crohn’s disease patients in Ethiopia, like with other LLMICs, is the access to a proper diagnosis and the costs of treatment,” Rajbhandari says. “Diagnostics like radiology and colonoscopy with biopsy are only available at large centres in capital cities.”
Rajbhandari adds: “Diagnosis is difficult because there are a lot of overlaps between Crohn’s disease and intestinal tuberculosis, as TB is much more prevalent in LLMICs. Once a diagnosis is finally made, the cost of treatments is prohibitive – for example, a single dose of a biologic therapy can exceed US$500 (£432).”
Hailemichael Desalegn, a gastroenterologist at St Paul’s hospital in Addis Ababa, says the illnesses he labels “the hidden scourge” are increasing in prevalence.
He believes the biggest challenge is lack of awareness by Ethiopia’s health professionals, as patients are often sent to gastroenterologists after antibiotics or TB medications have failed.
“There is a general misunderstanding that IBD/CD didn’t exist in low-income settings, and may not be considered in patients with typical symptoms,” Hailemichael says. “Most of my patients have symptoms for at least two years before a diagnosis.”
The drugs which are available in the country are the ones developed countries used 20 years ago, he says.
Fasika, as patient and doctor, is working hard to spread awareness, including through her involvement with Generation Patient, a US-based advocacy group specialising in young adults with chronic and rare conditions.
She has been extremely successful in “challenging the societal stigma and norms through empowering others and creating community” says Sneha Dave, executive director of Generation Patient.
Fasika no longer sees IBD as a weakness. “Now, two years into remission, I truly believe IBD has made me a stronger person. It has made me realise all the unhealthy lifestyles I had been leading, accept myself and make mental health a priority,” she says. “Sharing my story is a superpower I didn’t know I had.”
