28 September 2013

For acromegaly patients, rude stares are the smallest problem, writes Tengku Sofiah Aishah

MOST people aspire to stand out, especially in work or study, but for an acromegaly patient, he or she just wants to blend in.

“Acromegaly is a disease of growth hormone (GH) hypersecretion. Usually, the source is the pituitary tumour. It is always benign (non-cancerous) but often large and invasive,” says Professor Dr Nor Azmi Kamaruddin, head of Endocrinology Department at UKM Medical Centre.

Clinically, acromegaly is associated with increased amount of soft tissues, bone overgrowth and tall stature (if the disease begins before puberty). An important step in early intervention is not just looking for the disease outwardly, but also having blood tests done to rule it out.

“When I go out into the street, everyone stares at me. Sometimes they turn to look at me again when I pass by, so most of the time I prefer to stay at home,” says a patient who only wishes to be known as A.

In her teens, A was unusually tall and her features different from her peers. Perhaps it is human nature to stare at something out of curiosity despite knowing that it is rude, but for these patients, being stared at makes them uncomfortable and lowers their self-esteem. This explains why they have refused to be photographed.

Yet rude stares are the least of the patients’ concerns. They face bigger challenges caused by the physical changes.

“We can get used to stares but my shoe size has increased from six to nine and it is very difficult to find women’s shoes in that size,” says A.

In worse cases, patients experience abnormal gum and teeth growth to the extent that the teeth cannot function properly.

While the abnormal size and growth don’t hurt (except for mild joint pains and being easily tired), having a tumour in the brain gives patients headaches.


“If doctors dismiss the possibility of acromegaly based on the appearance of a patient, diagnosis is delayed,” says Dr Zanariah Hussein, head of Endocrinology Unit at Putrajaya Hospital.

“To date, there are fewer than 100 diagnosed acromegaly patients in the country when statistically, we are supposed to have 1,000. Some patients turn up for a check-up but never return for a follow-up.”

Patients who manifest the clinical appearance of acromegaly should not be afraid of their diagnosis as there are many treatment options.


Some patients do not let their condition get in their way of living the way they want to. Muzamir Mohamad Najir, a quality engineer at Sapura Holding, is happily married with three kids.

“It was awful at first when friends from childhood couldn’t recognise me. But that has not stopped me from having a normal life.”

Besides looking different and suffering from occasional joint pains, most can still live regular lives. Some, though, are not so lucky. Azizul experiences seizures even after surgery. His sleep is often interrupted by random attacks.

According to Dr Mohamed Badrulnizam Long Bidin, consultant endocrinologist at Hospital Kuala Lumpur, this is an isolated case. “The complication is due to the nature of the growth that is epileptogenic, but it is very rare,” he admits.


Any hospital with a neurosurgery department should be able to carry out surgical therapy for acromegaly but it is crucial to consult an expert in pituitary surgery.

“Medical therapy needs good drugs but surgical therapy needs a good pair of hands,” Dr Nor Azmi  says.


THE first Acromegaly Patient Education Day was held in March. In collaboration with the Malaysian Endocrine and Metabolic Society (MEMS) as the board council, a Malaysian Acromegaly Patients Support Group (MYAcro) was initiated to create awareness of this disease and as a support medium.

By Tengku Sofiah Aishah

This article was first published in www.nst.com.my on 8 May 2012.