Mycetoma: A Patient’s Struggle with a Neglected Disease

Nineteen years ago, while playing on the school field, Alsadik Mohamed Musa Omer pricked his foot on a thorn.  Like any other 15 year old boy, he continued playing and later cleaned the small wound caused by the thorn. Soon, the thorn prick was forgotten. A few weeks later, however, he developed an infection around the thorn prick that he again ignored. The infection continued growing and soon developed into sores.

Mycetoma PatientAfter about one year, the wound had grown into massive sores, and Alsadik was forced to visit the local Mangalil Hospital for treatment. He was diagnosed with eumycetoma, a fungal mycetoma. He had a first surgery at the hospital believing that he would be cured. However, two years later, the disease was back and more severe than it had been before.

Frustrated, he visited the Mycetoma Research Centre (MRC) for improved treatment. By this time, the infection was at a very advanced stage. The experts at the MRC tried out a number of treatments and a total of seven surgeries, but the disease kept recurring.

“I was in excruciating pain! I had to use a lot of pain killers just to be able to walk from one point to another. At some point, I got tired and decided to have my leg amputated,” Alsadik says, shaking his head.

It took him two months to convince the doctors at the MRC to amputate his leg. “All treatments were not working. The amputation has given me some peace, even though I know I am not completely cured,” he explains.

Alsadik dropped out of school after his first operation.  He was fortunately able to find work as a  Military Engineer, but he had to stop working after his last operation. His lack of income has been difficult for his wife and five children. Mycetoma treatments are very expensive (about US$ 5000 per year), and he has had to depend on well-wishers to access treatment.

All that Alsadik hopes for is a new and more effective treatment for mycetoma: “Mycetoma patients are really suffering. Patients use the treatment for over ten, fifteen or twenty years but to not get cured. I hope that a treatment will be discovered that will cure the disease in the shortest time possible.”