From the Press

20 Cases in Manitoba "just the tip of the iceberg"
-by Randy Turner, Winnipeg Free Press Reporter, 1994

By the time Jamie Benzelock turned 14, he’d seen enough of the inside of a hospital room.

Born with a rare blood disorder, Benzelock never knew when he’d be fighting off fevers or infections which would keep him in a hospital bed 40 to 50 days a year.

A sniffle or a little over-exertion could lead to a week-long stay in an isolation ward.

"It got to be one of those things," he said, "where I would look at a calendar and said, "This week I’ll be sick, that week I won’t, this week I’ll be sick, that week I won’t..."

Benzelock, a Grade 12 student at Miles Macdonnell Collegiate, still suffers from congenital neutropenia, a little-known disease that robs the body of white cells, which surround and destroy bacteria in the body.

Symptoms of the disorder range from ear infections to cold sores to pneumonia - and it can be fatal.

Still, so little is known about neutropenia that many doctors are unable to recognize the disease, which can also develop in cancer patients who receive chemotherapy.

In fact, most victims are only diagnosed properly after repeated check-ups.

Lorne and Lorna Stevens’ son Lindsey, for example, was not diagnosed with neutropenia until he was 18 months old. Doctors kept treating his infections, while telling the parents "Don’t worry."

"It may take four or five months even to get a blood test," Dr. Bonnie Cham, a pediatric haematologist at the Manitoba Cancer Research Foundation said. "With a rare disease, it takes longer to make the diagnosis."

Stevens said some people who suffer a mild form of the disease can live their entire life warding off infections with antibiotics and never even know they have the disorder.

In Manitoba, there have been 20 cases of neutropenia diagnosed. But, Stevens said, that’s only the beginning.

"We know because of a lack of awareness that’s just the tip of the iceberg," Stevens, founder of the Winnipeg-based Neutropenia Support Association, said.

Not too many years ago, children born with neutropenia often didn’t live past the age of two. Then antibiotics were developed, allowing doctors to keep kids like Lindsey Stevens and Jamie Benzelock alive.

The biggest medical breakthrough, however, has been the development of a drug called granulo-cyte colony stimulating factor (G-CSF), a hormone the body produces naturally to make white blood cells. For many patients, it’s a miracle cure. Their infections disappear.

However, due to its expense and infancy, only those with the most severe cases of neutropenia can use G-CSF.

About Neutropenia | Do Your Research | The Community | Adverse Reactions to Therapy | Neutropenia News
Recent News | News Archives | From The Press | Past Newsletters