Agony of living with rare liver disease

Anthony Maina Ng’ang’a, 27, at his home in Ruiru, Nairobi during an interview with The Standard regarding his battle with eosinophilic colitis, a rare form of colitis that can lead to other complications .PHOTO DAVID NJAAGA/STANDARD)

Six years ago, Antony Ng’ang’a, 27, was a young man full of hopes for a great future. But that hope has since been dashed by a rare disease he knew nothing about.

Ng’ang’a is suffering from primary sclerosing cholangitis (PSC), a rare form of liver disease that damages the bile ducts by hindering the flow of bile from the liver to the gallbladder and the small intestines, where it helps digest fats and fatty vitamins.

“It has been six years since my life changed, my dreams of excelling in life almost cut short by a disease I never knew existed,” says Ng’ang’a, who was then a bachelor of science in telecommunications and information engineering student at Dedan Kimathi University.

He developed a bout of diarrhoea in third year that went on and on. He visited the university’s dispensary where he was given antibiotics after testing his stool and urine. But the diarrhoea persisted.

Soon, he started having convulsions due to high fevers, rashes and at times a swollen face. He took different antibiotics but the diarrhoea didn’t stop. He had been treated for pneumonia and was to be put on medication for tuberculosis but he was too weak. His father, Anderson Maina, took him to Mombasa where he was working for a second opinion. The doctor said Ng’ang’a had a mutated form of typhoid and he was put on more medication. For a while, his condition seemed to improve but after a while the diarrhoea came back.

He sought another medical opinion, this time around the doctor recommended a colonoposcopy, a procedure that would entail inserting a long, flexible, narrow tube with a fibre optic camera through the mouth to look inside the rectum and colon, to enable the doctor establish the reason for the continuous diarrhoea.

Three months later, he underwent colonoscopy during a boot camp by Karen Hospital. The results revealed that he was suffering from esinophilic colitis. Within a week of treatment, the diarrhoea stopped.

But the doctor noticed that Ng’ang’a’s eyes were turning yellow and changed the drugs. Tests showed that his liver was overworking even before the medication. That is what led to the diagnosis that showed he had ascending primary sclerosing cholangitis (PSC).

Dr Allan Rajula, a gastroenterologist at the Aga Khan University Hospital, says that about five per cent of patients who have colitis such as that of Ng’ang’a may develop primary sclerosing cholangitis and 90 per cent of those who already have it may develop colitis as one major symptom.

Other symptoms are jaundice, which is the yellowing of the eyes and darkening of the skin and constant uncontrollable itching due to the accumulation of bile salts in the skin. The doctors told Ng’ang’a a liver transplant is the only cure for his condition. And the treatment can only be done outside the country for lack of experts and necessary infrastructure.

Dr Rajula says the surgery is complex and requires experts from different fields to deal with different components of the organ.