Treatment but no cure to control blood disorder

When Kathy Dilar felt increasingly fatigued and tired last fall, she knew something was wrong. She had lived an active life so the lack of energy was unsettling when she found herself yawning in the afternoon and falling asleep during the early evening news.

When Kathy Dilar felt increasingly fatigued and tired last fall, she knew something was wrong.

She had lived an active life so the lack of energy was unsettling when she found herself yawning in the afternoon and falling asleep during the early evening news.

At first, the doctor thought Dilar might have anemia or a low iron level, but diagnostic tests showed the exact opposite.

Dilar was diagnosed with hemochromatosis, a genetic disorder which causes the body to overload on dietary iron.

The iron builds up over time and, if undiagnosed and untreated, can cause lasting damage and lead to early death.

Hemochromatosis is a genetic disorder. There is a one in four chance of the disease for those whose parents were both carriers.

The symptoms can include liver damage, cancer, heart disease, adult onset diabetes, thyroid problems, chronic fatigue, arthritis, loss of libido, premature menopause, bronze or grey skin and personality changes.

“It can be fatal if it is not treated,” Dilar said.

As soon as she learned the diagnosis, she contacted her three siblings, urging them to be tested. None of them have the disorder.

At its peak, Dilar’s iron level was 14 times the normal level.

To reduce this, she must go for phlebotomy or bloodletting treatments every two weeks until the iron level is in the normal range. After five treatments, her levels are now seven times normal. This is a 50 per cent reduction, but more improvement is still needed.

Giving blood this often also meant her hemoglobin level dropped, again draining her energy level.

“The day I sat down at noon and didn’t get up until bedtime I knew I was in trouble,” she said.

Still, she is optimistic the disorder will soon be under control and she will only have to go for the phlebotomy treatments every few months instead of every two weeks.

While the phlebotomy treatment is the only way to control hemochromatosis, Dilar is working to curb her intake of iron.

For breakfast, she seeks out cereal not fortified with iron, such as Shredded Wheat with Bran.

She has also been told to drink tea with her meals.

“Tea inhibits the absorption of iron,” she said.

To bolster her red blood cell counts, she is now taking Vitamin B12 supplements.

She has also had to change her daily routines, doing active tasks in the morning, when she has the most energy.

Hemochromatosis is the most common genetic disorder in Canada, affecting one in 300 people. It is most prevalent in people of European and Celtic descent.

A free information session on the condition will be held at the Kelowna Ramada Hotel and Conference Centre, 2170 Harvey Ave., Kelowna on Tuesday, Aug. 9 from 7 to 9 p.m.

To register, call 604-279-7135 or e-mail healthinfo@toomuchiron.ca.

Information on hemochromatosis can be found at www.toomuchiron.ca.

 

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