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From illness to advocacy: Emmanuel’s story

FHI 360 works with Ghanaian foundation to fight Buruli ulcer disease

December 03, 2012

Emmanuel Agumah was preparing for his secondary school exams in Ghana's Brong Ahafo region in the year 2000. While studying, he noticed what looked like an insect bite on his right elbow. Within days, his arm and torso swelled so much that his classmates and others began avoiding him.

"Some of my friends related it to witchcraft or a curse…Children ran away when they saw me. Even my own brothers and sisters were reluctant to come near me. I was more or less isolated from society."

Agumah, now 31, had Buruli ulcer disease. It is a tropical disease that causes large lesions that eat away at the skin. If untreated, it leaves those affected with misshapen limbs and disabilities. It disproportionately strikes children in developing countries and has been detected in more than 30 nations. Ghana reported more than 11,000 cases since 1993, according to the World Health Organization, and it ranks second among the world's countries with confirmed cases. It is unclear how the disease spreads, but risk factors include agricultural work and living near bodies of water. Agumah may have contracted the disease when he worked on the family farm or fished in nearby swamps.

FHI 360 and The Hershey Company are working to improve awareness and prevention of the disease, and to expand community-based referral networks for residents of cocoa-growing communities. The program will help 1) reduce stigma by training volunteers to conduct advocacy activities, and 2) lessen the disease's footprint by encouraging community members' uptake of existing Ghana Health Service Buruli ulcer resources and assistance. In the two target districts, it will also establish rapid-response teams that search for and report new cases, visit bedridden patients, and arrange transport to clinics and hospitals for those who need treatment.

Getting to a hospital is a hurdle for many patients with Buruli ulcer. Agumah's father shuttled him from hospital to hospital in Brong Ahafo. When the family's money dwindled, Agumah visited traditional healers. After nine weeks of seeking help in shrines, Agumah and his father traveled to St. Martin's Catholic Hospital in Agroyesum, more than 750 km (about 470 miles) away. This hospital, in the Ashanti region, was one of five Ghanaian hospitals that could diagnose and treat Buruli ulcer disease.

After two years in the hospital, many surgeries and physical therapy, Agumah learned to use his left hand to write. After being discharged in early 2003, he completed high school and earned a diploma in accounting at Kumasi Polytechnic in 2009, thanks to assistance from the Matuoka Fund of Japan and Dr. Kingsley Asiedu of the National Buruli Ulcer Control Program.

Nine years after his first ulcer, Agumah established the Buruli Ulcer Victims Aid (BUVA) Foundation, which will partner with FHI 360 in the Ghana initiative. BUVA raises awareness of Buruli ulcer disease and helps former patients to overcome community stigma and continue their education. FHI 360 will provide support for BUVA to expand its administrative, financial, and measurement and evaluation capacities.

Agumah will be a critical part of the program's efforts to raise awareness about the disease. He addressed a World Health Organization meeting on Buruli ulcer disease in Geneva in 2008, gave a series of talks at four U.S. public universities in 2010 and continues to speak about the impact of this little-known illness on his life.

"I am happy to be alive today. Although I cannot bend my right elbow or fully raise my shoulder, these are minor problems for me. My story is for all those who have suffered, are suffering and will suffer as a result of Buruli ulcer. It is not worth giving up."