Acromegaly Awareness Day shines light on rare condition that is hard to diagnose

Crystal Garrett speaks with an endocrinologist and a neurosurgeon about acromegaly, its signs, and treatment options.

Acromegaly Awareness Day is November 1. The rare condition affects adults and causes bones, organs and tissues to grow, resulting in joint pain, thick skin and other medical concerns. The rare condition is often misdiagnosed.

Dr. Ali Imran is the chief of endocrinology at Dalhousie University. He says the chronic condition is caused by high levels of growth hormone – one of several hormones produced by the pituitary gland.

“There are two distinct conditions caused by high levels of growth hormone,” Imran says. The first, gigantism, causes people to grow very tall and occurs when there is elevated growth hormone before someone reaches maturity.

“If you have high levels of growth hormone after you’ve reached your mature height, that’s the condition called acromegaly.”

Imran says acromegaly can change facial features, enlarge hands and feet, entrap nerves, cause arthritis, enlarge organs including the heart, lead to sleep apnea caused by tissue growth in the throat and cause some kinds of cancer.

“It’s just a constellation of symptoms which really involve all systems of the body,” Imran says.

A lot of people don’t realize they have acromegaly but Dr. David Clarke, a neurosurgeon at Dalhousie University, says it is treatable.

“With imaging we find out where the tumour is and the goal is to remove it surgically,” Clarke says.

Tumours in the pituitary gland that produce too much growth hormone are the target of the surgery, Clarke says.

“The way that we get there to take that out is operating through the nose,” Clarke said. The surgery team also includes ear, nose and throat specialists, he said.

There are multiple reasons why acromegaly is rarely diagnosed, says Imran.

“It’s a relatively rare disease,” he says. “We expect three to five new cases, per million, per year but the other problem is there is limited awareness of the disease.”

Imran says the symptoms are subtle and in isolation they often happen for other reasons.

“For instance, sleep apnea is very common.”

Imran said by the time the disease is diagnosed it’s often quite advanced.

Clarke says people who think they have acromegaly should speak with the doctor and people looking for more information should visit the Atlantic Acromegaly Support Group - started by patients who have been diagnosed and treated for the rare condition.

“We’re very inspired by these patients,” Clarke says.