The following is a message which should be read by anyone who is related by blood to the Lounder family descendants. It is very important.
Deadly iron disorder sparks call to action Apr. 5, 2003
Provided by: Sun Media
Written by: Holly Lake, Ottawa Sun
OTTAWA -- Mere months before he died, Anna Kyle's brother Doug had been the picture of health.
Muscular, robust and fit, the 46-year-old Peterborough man was running a thriving construction business and looking forward to an upcoming cruise with his wife.
Things changed quickly in the summer of 2000. The first sign all was not well was a fatigue that could not be rested away.
Doctors blamed Doug's work. When it persisted, they diagnosed him with diabetes and said all would be okay once his insulin was regulated. But it never was.
Doug's condition continued to go downhill and with it came stomach distension, disorientation and mood swings.
Fatigue and stiffness in his hands reached a point where he couldn't even carry a container of nails to his truck.
Hospitalized in November, Doug was optimistic he'd be home in no time. By Dec. 10, he was dead.
"When I walked in at the funeral I didn't recognize him," Kyle says. "I still can't get over it."
Doug looked like he'd battled cancer, having lost more than 40 lbs. in a few months.
Initially, doctors said he'd died from complications of diabetes.
An autopsy revealed hemochromatosis had killed him.
Kyle had never heard of it, but was devastated to learn it could have been treated and Doug's death avoided.
"That's the part where you really feel cheated," she says. "It was a needless death and needless pain. You feel your medical system has let you down."
In the years since, she's learned much about this genetic condition which causes the body to absorb too much iron.
Untreated, hemochromatosis leads to a deadly iron overload.
But once diagnosed, it's controllable, mainly through a procedure known as a phlebotomy, which removes pints of blood from the body to decrease iron levels.
Prior to the discovery of the hemochromatosis gene in 1996, it was thought to be a rare condition. Now the most common hereditary disease among populations of Northern European descent, it's known to affect as many as 1 in 300.
But as common as it is, diagnoses aren't. Many people have never heard of the condition and its symptoms are vague and easily mistaken for conditions caused by other ailments.
Of more concern is the lack of awareness within the medical community, with few physicians including iron profile testing in regular physical exams.
Elaine Robinson even encountered a specialist who was unsure of how to treat her. But she's not surprised.
When Robinson was a nursing student in the 1960s, there was less than a page's worth written about hemochromatosis in her curriculum. While it's now taught more extensively, there's still plenty for doctors to learn, she says.
"The ideal would be that they'd test everybody starting at about age 25," she says. "But certainly test those children of people that they know have hemochromatosis. They have to be checked genetically."
To develop hemochromatosis, you must acquire the gene from both parents. However, if only one parent has the gene, the child can still carry it.
Kyle knows carrying the gene doesn't exclude you from difficulties. She doesn't have hemochromatosis, but has had digestive problems since childhood. In recent years she's had thyroid problems and her fingers have swollen and stiffened.
UNEXPLAINED JOINT PAIN
Every four months she has to undergo phlebotomies to keep her iron levels in check.
There's no definite set of symptoms, but they can include severe weakness or fatigue, unexplained joint or abdominal pain, diminished memory and disorientation.
Arthritis in the fingers can be one of the earliest signs.
Symptoms usually begin in middle age and if the overload goes untreated, impotence, infertility, liver cancer, heart failure, diabetes, cirrhosis of the liver and damaged endocrine glands can result.
It's been called the silent killer and it was so in Jim Lounder's case. When he developed arthritis and diabetes, he thought nothing of it because both were prevalent in his family.
It took an autopsy to reveal it was hemochromatosis.
When his wife Marjorie looks back, she can see he had symptoms: Joint problems, chronic fatigue and abdominal pain.
Each was treated, but the dots were never connected.
When Jim died in 1997, he was thin and his complexion grey. His muscles had wasted, his liver failed and cancer had set in.
Having been touched by hemochromatosis, these women are determined to prevent such needless suffering and loss.
As founders of the first Canadian hemochromatosis support group, they're not only there to support one another, they're aiming to get the word out about the disease.
At their own expense, they've placed brochures in drugstores, written hundreds of area doctors asking them to be on the lookout for hemochromatosis and armed patients with information and research.
Thanks to their insistence, the Canadian Hemochromatosis Society now publishes a brochure in French.
Kyle says they want to see Health Canada take a more active role in raising awareness and disseminating information.
CLINIC TO TEACH DOCTORS
"Right now there's nothing going on there," she says.
Ultimately, Robinson says their goal is to see a hemochromatosis clinic established to reach doctors at the teaching level. She's amazed medical schools don't make use of people with the condition by having them speak to students.
"I think it could be really beneficial," she says.
"I don't know if it's the mentality 'let's not be taught by the public,' but physicians and medical students would probably be really surprised by the knowledge of people in our group."
For information on the hemochromatosis support group, contact Lounder at (613) 739-9277 or Robinson at (613) 521-5897.
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