Joe Kutai smiles heartily, but beneath his friendly, easygoing look is an untold story of pain and struggle.
His 28-kilogramme frame will hardly betray the 15 years the Form Two student at Ofafa Jericho High School has lived.
“When I was in Class Four, I began getting tummy problems and would feel uncomfortable whenever I ate. Even if I ate just a little, I would get a bloated feeling as if I had eaten too much. I would then end up vomiting if I continued to eat,” he tells the Nation.
His stomach would be filled with fluid, and sometimes it would go to the lungs, making it hard for him to breathe.
FOREIGN ORGANISMS
His physician, Dr Juliana Muiva, says the teenager who enjoys cooking for his family and dreams of becoming a pilot, suffers from autoimmune hepatitis.
She says the disease occurs when the body’s immune system, which is tasked with fighting foreign organisms or disease-causing agents, identifies an organ as foreign.
“The body then mobilises its resources and begins to attack the organ. In Job’s case, it was his liver that came under attack,” says Dr Muiva.
The cause of the disease is unclear though in some patients a previous Hepatitis A or B infection could trigger it.
“Left untreated, autoimmune hepatitis can lead to scarring of the liver (cirrhosis) and eventually liver failure. If diagnosed and treated early, however, the condition can be controlled with immuno-suppressors or drugs that suppress the immune system.”
SIX MONTHS
“Not all patients are supposed to get a transplant. Should the condition refuse to respond to drug treatments or in cases when the liver disease is advanced, a liver transplant then becomes the best option,” she adds.
Job’s mother, Ms Mary Mutethu, says the boy’s condition has been a source of pain to the family for the last eight years. “He started feeling unwell in 2012. We took him to Modern Hospital in Komarock, where they diagnosed TB and treated him for six months. When he did not improve, we took him to Kenyatta National Hospital. After a battery of tests including x-rays and MRIS, to determine the source of swelling in his belly, medics discovered autoimmune hepatitis. If allowed to go on it could lead to cirrhosis of the liver,” she says.
The disease causes protein deficiency which in turn slows down the growth of body tissues. At just 28 kilogrammes and a height slightly over four feet, Job could easily be mistaken for a 12-year-old.
1.3 MILLION
Little is known about the rare disease’s prevalence in the country, which is classified by the World Health Organisation as a Hepatitis B endemic region, where the disease is very common. WHO reported that 1.3 million people died due to viral hepatitis in 2015 alone.
Autoimmune hepatitis is, however, a more rare form of the disease, something Dr Muiva says contributes to the relatively low level of awareness among Kenyans regarding the condition.
Symptoms include pain in the right side of the abdomen, general body swelling, growth in the liver, itchiness and changes in the colour of the stool.
“We need to educate our people more on this form of the disease, so that they can come in for tests to have it diagnosed and treated on time. If we catch it early, 90 per cent of the cases are treated and managed sufficiently for patients to go back to their normal lives,” she said.
LIVER TRANSPLANT
“It is the cases that have progressed to fibrous tissue in the liver or cirrhosis that present a challenge, but these can be managed with medication or a transplant if the disease has not advanced to severe levels,” she added. Ms Mutethu explains the urgency of the battle her son faces.
“We got a second and third opinion from Aga Khan University Hospital and Global Gleneagles Hospital who agreed with the initial diagnosis. He urgently needs a liver transplant,” she says. The family requires at least Sh4 million for the procedure minus flight, hotel accommodation costs in addition to covering a recuperation period of at least a fortnight in India after transplant.
DONATE ORGAN
“We cannot do the procedure in Kenya because only diseased organ transplants are done here. In India, they can do a live organ transplant,” she adds. A live kidney donor, Job’s elder brother, is ready to donate the organ.
During the procedure, 60 per cent of the kidney will be transplanted to Job, leaving his brother with the 40 per cent portion.
“The remainder of the kidney will grow back to near normal size and function, but he will required to be under medication. In three to four weeks after taking the immune-suppressors he will recover fully. Job will however take between 8 to 12 weeks before he can be fit to travel back to the country,” says Dr Muiva.