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CML Patients: Survivors Changing The Language of Cancer

By Expert HERWriter Guide Blogger
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Chronic Myelogenous Leukemia related image Andrey Armyagov/PhotoSpin

This is why the Internet, and networking across country borders, has become key in empowering patient advocates, exchanging information and best practices between the groups, and collaboration across languages and countries.”

In the United States, CML patients and caregivers can get support from the National CML Society (NCMLS), which provides a centralized hub of information. Founded in 2007 as Carolyn’s Hope, the organization quickly grew beyond meeting local needs and became the NCMLS in 2009, serving the needs of the CML community in the United States and its territories.

In Canada, the CML Society of Canada was established in 2006 and provides support, education and information on current and emerging treatments and on research initiatives.The society notes that the needs of the increasing number of surviving patients must be addressed with specialized care and monitoring.

CML Awareness Day is held on September 22 because the Philadelphia chromosome, which most often causes the disease, develops after birth when chromosomes 9 and 22 exchange some of their genetic material. It is estimated that by 2050 nearly 300,000 people in North America will be living with CML.


CML Support Organizations:

United States: The National CML Society

Canada: CML Society of Canada
(Note: Site is available in English or French)

CML Support Groups Directory Worldwide:

Targeted Treatments for Cancer Information:

Newsweek: Curing Cancer: What treatable tumors can teach us about improving the odds in the deadliest cases. September 9, 2010

Targeted Cancer Therapies: National Cancer Institute:

Understanding Targeted Therapies for Cancer:

Add a Comment2 Comments

Expert HERWriter Guide Blogger

Lottie - Thanks for your comments and welcome to EmpowHER. I really like what you said - "I found my greatest advocate online, until I could stand on my own two feet. Life goes on and you want to be there."

I hope you will come back to the site and share more of your thoughts with us in the future.
Take care,

October 1, 2010 - 5:27pm
EmpowHER Guest

Changing the language of cancer is an excellent beginning for a new CMLer to start their learning process. You are never done learing about CML, as change is a constant. When someone says something about leukemia, we in the CML community want to know what kind of leukemia. I am glad that you have catagorized it, as each leukemia is different and certainly treated differently. I think the first thought I had was to go out into the community and find someone with CML to talk to, but I couldn't find anyone, and that is because it is the rarest of the leukemia groups, and only affects about 4000 people in the US every year. Only a few hundred are dying each year, which means we are living longer, thanks to the generous researchers who use their grant money to find newer treatments. Personally I would like to hear the word "cure" more often in context of learning more about new treatments, but until that comes along, we will live with the status quo. A good CML support group is the best place for a newcomer to start, as there are people who have been there and can calm your greatest fears. I found my greatest advocate online, until I could stand on my own two feet. Life goes on and you want to be there.
Excellent article, Pat.
Lottie Duthu

September 27, 2010 - 10:31pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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