Facebook Pixel

CML Patients: Survivors Changing The Language of Cancer

By Expert HERWriter Guide Blogger
 
Rate This
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.

Resources

CML Support Organizations:

United States: The National CML Society
http://www.nationalcmlsociety.org

Canada: CML Society of Canada
(Note: Site is available in English or French)
http://www.cmlsociety.org/

CML Support Groups Directory Worldwide:
http://www.cmladvocates.net/index.php?option=com_content&task=blogsection&id=4&Itemid=45

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
http://www.newsweek.com/2010/09/07/what-we-can-learn-from-curable-cancers.html

Targeted Cancer Therapies: National Cancer Institute:
http://www.cancer.gov/cancertopics/factsheet/Therapy/targeted

Understanding Targeted Therapies for Cancer:
http://wn.com/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,
Pat

October 1, 2010 - 5:27pm
EmpowHER Guest
Anonymous

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
Image CAPTCHA
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment
Expert HERWriter Guide Blogger View Profile Send Message

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.

Chronic Myelogenous Leukemia

Get Email Updates

Related Topics

Chronic Myelogenous Leukemia Guide

Guide

Have a question? We're here to help. Ask the Community.

ASK

Health Newsletter

Receive the latest and greatest in women's health and wellness from EmpowHER - for free!