When Vincent Oruka began experiencing mild headaches and feeling lethargic, he put it down to his job.
After all, work as a farmhand was physically draining. But his condition gradually grew worse, and he began noticing changes in his body.
“I realised something was wrong when my shoes couldn’t fit, and I couldn’t get an item out of my pocket because my hands had grown extremely large,” Oruka recalls the beginning of his ordeal six years ago.
His shoe size increased from nine to 11 in two months, and he could barely recognise the face that stared back at him in the mirror.
After a year of seeing doctors, he was diagnosed with acromelagy, a disorder of the pituitary gland.
The main features of the condition are large hands and feet, a widened nasal ridge and an enlarged jaw.
Hormone specialist Nancy Ngugi explains that acromegaly is a condition that progresses slowly and is caused by overproduction of the human growth hormone (HGH), usually due to a tumour in the pituitary gland.
The pituitary gland is located at the base of the brain and controls the production and release of different hormones, including the human growth hormone.
“The human growth hormone regulates growth and development, and people with acromegaly have too much of it.
“When the HGH is secreted into your bloodstream, it triggers your liver to produce a hormone called insulin-like growth factor-I (IGF-I), which stimulates the growth of bones and other tissues,” explains Dr Ngugi.
Those with the condition suffer frequent headaches because the tumour presses on nearby brain tissues. People with the condition might have blurred vision if the tumour is pressing on the optic nerve.
The word “acromegaly” comes from the Greek words “acro” which means extremities, and “megaly”, which means the enlargement of a specific body part.
The condition is known by different names depending on when it occurs,” offers Dr Ngugi, a consultant endocrinologist at Kenyatta National Hospital in Nairobi.
“If the condition occurs before the bones fuse — at the age of 18 for girls and 20 for boys — it is known as gigantism, while if it occurs in adulthood, it is known as acromegaly,” explains the doctor who also works as a physician at the national referral hospital.
In women, she says, the condition causes changes in the menstrual cycle and breast discharges due to overproduction of the hormone known as prolactin, which is best known for enabling women to produce milk, although it has other functions.
Dr Ngugi says one of the locally available treatment options for acromegaly is surgery. During the procedure, the surgeon reaches the tumour through an incision in the nose and, removes it using special tools.
“If the tumour has spread, the surgeon might decide to perform a craniotomy (open the skull) to remove the tumour,” Dr Ngugi says, adding that the cost of the tests and surgery are prohibitive, which discourages people with acromegaly from seeking treatment.
Other options include drug therapy and radiotherapy. However, people respond differently to the treatment regimes, Dr Ngugi notes, adding that some treatments are not available in Kenya.
The disease is difficult to diagnose since it develops gradually and cannot be easily diagnosed on the basis of features such as enlarged fingers and toes, so most patients tend to ignore the symptoms.
“It takes a keen patient and a very observant doctor to diagnose acromegaly,” says Dr Ngugi.
She warns that if left untreated, the symptoms can get worse, and the risk of high blood pressure, diabetes (high blood sugar), and cardiovascular disease increases.
Though it is hard to come by data on the number of Kenyans with the condition, global statistics estimate that it occurs in one out of every 140,000 to 250,000 people, and affects men and women equally.
Oruka’s enlarged fingers are evident as he scrolls through his phone to retrieve the number of his former employer, who has given him accommodation and pays for his upkeep.
And his enlarged tongue — the condition is medically known as macroglossia — sometimes interrupts his sleep, but he has devised a way of coping.
“I wake up, boil some water, make a warm cup of cocoa and this warms me back to sleep within 10 minutes,” he says, adding that he experiences such episodes once or twice a week.
The excessive growth of his jawbone, known as prognathism, draws a lot of attention whenever he is in public. “My hands, fingers and feet are painless but my facial features attract a lot of attention when I go out. However, this does not discourage me from greeting them,” he says.
When the disease struck, Oruka was working as a farmhand for a family in Karen, Nairobi. The family has been supportive in his search for a cure, although he can no longer work.
“His condition makes it impossible for him to work yet he is an amiable and hardworking man who is keen to earn his keep,” says Grace Ohayo-Mitoko, whom he worked for after her parents retired. She says they consider Oruka part of the family and are distressed that his future remains uncertain. Ohayo-Mitoko provides the Sh6,000 he needs every month for food, transport and visits to the clinic.
Depite his condition, Oruka, 40, maintains a sense of humour.
“I am still a young man and did not notice that my fingers were growing disproportionately big because I am single and do not wear a ring,” he jokes.
So, does that mean life would have been better if he were married?
“If I had a wife, she would be telling me that I am still handsome despite the illness and together we would conquer it despite everything,” he chuckles.
Oruka, remains optimistic and believes he will regain his health. However, it will be an uphill task. When he visited Kenyatta National Hospital (KNH), he was told to register with the National Hospital Insurance Fund, which Ohayo-Motoko helped him do. But he could not raise the Sh350,000 required for the operation, so the hospital cannot schedule his operation.
When not attending the bi-monthly neuro and diabetes clinics at Kenyatta National Hospital, he remains holed up in his one-room shack made of corrugated iron sheets in at the back of his former employer’s home, which is now occupied by another family.
His house is partitioned with a curtain, with one section serving as the living room and the other as the bedroom. A radio, his connection with the rest of the world, is placed strategically by his bed on a wooden stool that has seen better days.
“This radio informs me about what is happening beyond my house because I can no longer interact with the world,” he says.
Outside he has a small kitchen garden, where he has planted sukuma wiki and spinach in buckets. In one corner, near what was once a cowshed, are healthy pumpkins with lush leaves.
He is passionate about dairy and poultry farming but says, for the time being, he is focusing on getting better.
“I have a passion for farming, which is how we live back in the village,” says Oruka.
His condition has led to him developing insulin-dependent diabetest. Insulin is a hormone that helps the body’s cells absorb glucose from the blood to provide energy.
Because of the diabetes, he maintains a strict dietary regime, eats specific amounts of carbohydrates, proteins, vitamins and minerals.
“I inject myself three times a day before meals to control my insulin levels,” he explains. He gives himself a 44ml shot before breakfast, 10ml to 16 ml before lunch , and 24 ml before dinner.
Whenever he travels and has to eat away from home, Oruka carries his medicines and looks for a secluded place to inject himself before eating. He says that skipping meals aggravates his diabetes.
Oruka’s diabetes mellitus can be cured through surgery of the pituitary gland, says Dr Ngugi.
Meanwhile, he looks forward to the day his body will be able to produce insulin so that he does not have to rely on the injections.
“I am confident that once I recover, I will be able to fend for myself, even if I make just Sh20 a day,” he told DN2.
But the condition has taken a toll on his health, and he is forced to use a crutch.
As he waits for his surgery to be scheduled, Oruka says he would like to join a support group of patients either with acromegaly or who have other hormonal problems.
“We go through so much that I would like to share my experience with other patients and the general public so that know how to relate to us,” he says.
“You can only talk about a condition you have lived with and understand,” he adds.
While he cannot see the light at the end of the tunnel, Oluka is grateful for small mercies and cherishes daybreak, especially seeing the first rays of the sun, which he says remains a privilege despite his circumstances.
“Being alive is a greater blessing than good health,” he says.