Marking World CML Day on September 22nd

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New survey conducted by CML-IQ highlights need for CML awareness and increased resources for patients.

History of CML

CML Infographic - 60 Years of Advancement

A website that focuses on CML is a great idea. A reliable Internet resource is critical.

Today has been designated World CML Day to broaden understanding of chronic myelogenous leukemia, a form of blood cancer that affects approximately 5,000 Canadians. In most cases, CML is caused by a mutation affecting chromosomes 22 and 9. So that date – 22/9 – has become a powerful symbol as the worldwide community unites to raise awareness about the disease and the lives it affects.

CML is at the forefront of the current revolution in cancer care – the first malignancy where treatments can effectively target the underlying genetic defect that causes most cases of the disease. But treatment success depends on people understanding their illness. With early, ongoing treatment, most people can survive CML.

“Too few CML patients get the time they need with their doctor to fully understand their diagnosis,” says patient advocate Lisa Machado.

This need for information was highlighted in a recent survey by CML-IQ, a website wholly devoted to providing people with the latest research news, as well as tools and tips for daily living with CML. The survey found that when people were first diagnosed, most heard little after the doctor said “cancer” or “leukemia.” So a majority – 81% – immediately turned to the Internet for more information about their diagnosis.

“If you are going to use the Internet for information, you need to make sure you are getting the right information,” says Dr. Brian Leber, Professor of Hematology at McMaster University, Hamilton. “People need what I call the golden triad – the information must be current, trustworthy and valuable.”

Anne St-Michel, publisher of the website CML-IQ, agrees and her team is dedicated to ensuring that all three of the Leber criteria are met. “The Internet is an excellent resource if used wisely, but people have to be a little cautious,” she says. “What they read may be inaccurate or out of date. That’s why we developed CML-IQ.”

CML-IQ provides weekly news articles, updates from major research meetings, and interviews with researchers. The site also provides tools, such as the infographic “60 Years of Advancement in Chronic Myelogenous Leukemia,” that can be downloaded at http://cml-iq.com/marking-world-cml-day-september-22.

“A website that focuses on CML is a great idea,” Dr. Leber says. “A reliable Internet resource is critical.”

Having lived with CML for six years, Machado knows firsthand how important good information is to ensuring positive outcomes for patients. “For people to best manage their health, they need access to credible information about their disease, medications and how to maintain emotional wellness in the face of a cancer diagnosis,” says Machado, who writes a column on CML-IQ from the patient’s perspective. As part of her commitment to the CML community, Machado also founded the Canadian CML Network, a group dedicated to providing educational, emotional and social support to people affected by CML.

For more on the Canadian CML Network, send an email to info(at)cmlnetwork(dot)ca, or visit them on Facebook at http://www.facebook.com/thecanadiancmlnetwork.

To read more about CML, visit the CML-IQ website at http://cml-iq.com/. On the site, you can download the infographic and sign up for a free subscription to receive regular news updates.

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Anne St-Michel
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