The right amount of iron in the body is a good thing.Too much, and the scenario can potentially turn deadly.
What is hemochromatosis?
Canadian Hemochromatosis Society executive director Bob Rogers will be in Abbotsford on Wednesday to talk about the country’s most common genetic disorder — hereditary hemochromatosis (HHC).
This potentially fatal condition is actually caused by a defect of iron metabolism and can lead to iron overload in vital organs, joints and tissues.
The good news is, says Rogers, that the complications caused by HHC are preventable if a diagnosis is made before the excess iron causes irreversible damage. The bad news is, that while hemochromatosis is common, the tests to detect it are not widely performed.
“There are simple blood tests, serum transferrin (SF) or transferrin saturation (TS), that can be done to screen people for the disorder. These tests are not part of a general medical checkup, they have to be specifically ordered on a blood lab requisition form. We’ve been lobbying for years to get more tests done early to detect the problem.”
DNA testing can confirm the presence of the three mutations known to cause hemochromatosis, he said.
Rogers has been with the Canadian Hemochromatosis Society, a non-profit society, for five years.
He believes strongly in the work that it does to raise awareness about the disorder.
“My job is to get the word out about hemochromatosis,” Rogers said from Lillooet, one of the stops for his Power Point presentation.
“I’m 61 now and for the next years until my retirement, I want to give back by helping people understand what we know about hemochromatosis.”
How prevalent is it? According to a study, 1 in 300 in the general population are affected.
“If we can find one person with hemochromatosis [through testing], then maybe we save their entire family.”
Indeed, by the end of his “talking tour” this summer, Rogers will have visited many B.C. communities.
The society invites interested Langley residents to come to the Abbotsford session.
Frank Berto, event co-ordinator for the society, says the office has received “quite a few queries” about hemochromatosis from people all over B .C.
In his presentation, Rogers traces the history and possible origins of the disease, which dates back to 1,000 years ago when the Celts were invading northern Europe.
The Canadian Hemochromatosis Society was established to create awareness about this not well understood but common disorder, so that early diagnosis would become the rule rather than the exception.
The society provides information and support to those adversely affected by iron overload.
Rogers will speak at the Best Western Plus Regency Inn and Suites, 32110 Marshall Road, Abbotsford at 7 p.m. on Wednesday. The hotel is located just off the Clearbrook Road exit from Highway 1.
The informational seminar will cover the treatment and management of hemochromatosis.