the doctor offering hope to Crohn’s patients in Ethiopia

In her fourth year at Addis Ababa University, Ethiopia, Fasika Teferra was about to become a doctor when the pain started.

When she finally went for a colonoscopy eight months later, she hoped that a simple lesion would be found. Instead, the camera showed a more serious illness and, as a medical student, she didn’t need an explanation.

“I was dying to put a name to the pain I was feeling because knowing was the important first step to finding the cure,” she says. “I was awake throughout the procedure and my heart just sank when the endoscope arrived at the disease site and I saw a typical Crohn’s disease (CD) appearance.”

The human toll of non-communicable diseases (NCDs) is huge and growing. These diseases claim the lives of around 41 million of the 56 million people who die each year – and three-quarters of them are in developing countries.

NTMs are just that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental, and behavioral factors. The main types are cancers, chronic respiratory diseases, diabetes and cardiovascular diseases – heart attacks and strokes. About 80% are preventable, and all are on the rise, spreading inexorably around the world as aging populations and lifestyles driven by economic growth and urbanization make ill health a global phenomenon.

NCDs, once seen as diseases of the rich, now have a grip on the poor. Illness, disability and death are perfectly designed to create and deepen inequalities – and being poor makes it less likely that you will be accurately diagnosed or treated.

The investment in fighting these common and chronic diseases that kill 71% of us is staggeringly low, while the cost to families, economies and communities is staggeringly high.

In low-income countries, NCDs – usually slow, debilitating diseases – see a fraction of the money needed invested or given away. Attention remains focused on the threats of communicable diseases, but cancer death rates have long since exceeded the number of deaths from malaria, tuberculosis and HIV/AIDS combined.

‘A Common Condition’ is a new series from The Guardian that reports on non-communicable diseases in the developing world: their prevalence, solutions, causes and consequences, telling the stories of people living with these diseases.

Tracy McVeigh, Writer

Teferra, 27, was initially in denial because “we were taught that inflammatory bowel disease (IBD) was almost non-existent in developing countries.” She went through what she says was a “nasty cycle of pretending to be happy and healthy in front of everyone and crying in pain at night”, and thought about dropping out of medical school. But learning that there were other people and doctors in Ethiopia living with IBD was 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 thought to myself, if they can do it, so can I. Knowing that there are Ethiopian patients with IBD who lead a professional life motivated me to know more about my condition and I am went looking for these people online.

A US Facebook group introduced her to other people living with IBD, but she says she “never really fit in.” So in 2020, two months before graduation, Teferra started her own support group, the charity Crohn’s & Colitis Ethiopia. The exact cause of IBD is not known, it is a chronic disease with no cure, which makes support networks for those who must learn to live with the disease especially vital.

Teferra says the true extent of IBD prevalence in Ethiopia is unknown, as the last study was done in the 1990s.

“It’s crucial that people understand the symptoms and are diagnosed early, because early diagnosis means early interventions,” she says.

Patients with Crohn’s disease often suffer from abdominal pain and other debilitating symptoms and complications such as fistulas and strictures. It has been called a “lifestyle” disease of industrialized countries, according to Crohn’s Disease Among the Poorest Billion, a study of low- and lower-middle-income (LLLP) countries published in 2021.

Ruma Rajbhandari, assistant professor at Harvard and lead researcher on the report, says there appears to be more Crohn’s disease in Ethiopia than first thought.

The biggest challenges for Crohn’s disease patients in Ethiopia are access to correct diagnosis and treatment costs

“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 results of this survey show that across Africa, the highest numbers of patients with Crohn’s disease were reported in Ethiopia and Tunisia.

Rajbhandari says the researchers found “very few gastroenterologists – less than 20” for Ethiopia, which has a population of over 115 million.

“The biggest challenges for Crohn’s disease patients in Ethiopia, like other LLMICs, are access to proper diagnosis and treatment costs,” says Rajbhandari. “Diagnostics like radiology and colonoscopy with biopsy are only available in major centers in capital cities.”

Rajbhandari adds, “Diagnosis is difficult as there is a lot of overlap between Crohn’s disease and intestinal TB, 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 biological treatment can exceed US$500 (£432).”

Hailemichael Desalegn, a gastroenterologist at St Paul’s Hospital in Addis Ababa, says diseases he calls a “hidden plague” are increasing in prevalence.

He thinks the biggest challenge is the lack of awareness among Ethiopian health professionals, as patients are often referred to gastroenterologists after antibiotics or TB drugs have failed.

“There is a general misunderstanding that IBD/CD doesn’t exist in low-income settings and may be overlooked in patients with typical symptoms,” says Desalegn. “Most of my patients have symptoms for at least two years before a diagnosis.”

The drugs available in the country are those that developed countries used 20 years ago, he says.

Teferra, as a patient and physician, works hard to raise awareness, including through her involvement with Generation Patient, a US-based advocacy group specializing in young adults with chronic and rare diseases.

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She has been extremely successful in “challenging stigma and social norms by empowering others and building community,” said Sneha Dave, chief executive of Generation Patient.

Teferra no longer sees IBD as a weakness. “Now, after two years in remission, I truly believe that IBD has made me a stronger person. It has made me realize all the unhealthy lifestyles I was leading, accept myself and make mental health a priority,” she says. “Sharing my story is a superpower that I didn’t know I had.”

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