Tuesday, February 26, 2013

Interesting post from the Public Health Perspectives blog

The Problem with "Fighting" Cancer
http://blogs.plos.org/publichealth/2013/02/26/the-problem-with-fighting-cancer/

Atif Kukaswadia wrote a good post on the Public Library of Science's blog, discussing the ways people use military language when talking about cancer and the people that have it. 

Not sure if I would call the term 'survivor' as purely military - I have survived natural and man-made disasters, after all, so 'surviving' what happened to me with cancer could fit. But I do agree with the the quote from Heather Cleland in the article: "The language around cancer—of “battles” fought, won, lost, and succumbed to—fails to consider the sheer chance of it all...."

The way I see it: Don't call me a fighter...I am a cancer wearer. I wear cancer like I would wear clothes that I can't take off. Approaching it as a matter-of-fact is how I work towards balance daily. 

Sunday, February 24, 2013

Another way to search scientific information on Adenoid Cystic Carcinoma

Quertle - http://www.quertle.info.  Quertle  is a wonderful (and award-winning!) search site, designed for life science professionals seeking focused information. Health information consumers looking for information on rare disorders, such as Adenoid Cystic Carcinoma, may find articles that can be discussed with health professionals. Quertle searches PubMed, Toxline, and other professional databases, and offers scientists the ability to self-add their conference presentations and posters. Here is a link to a simple search on Adenoid Cystic Carcinoma:

http://goo.gl/nFF74

Users can create their own space on the site, called MyQuertle, which will save searches and preferences. Some links to full-text are available, but full-text access is still better for non-affiliated consumers through their local public library.

Please remember to discuss any information you locate with your own health professional team before acting on what you read.

Wednesday, February 20, 2013

Rare Disease Day is coming up: February 28th

Rare Disease Day is coming up next week, with the theme: Rare Disorders Without Borders.
Here is the global site:
http://www.rarediseaseday.org 

According to the site,
"A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time."

I think ACC/AdCC counts as rare in both places. If you want to upload a video or photo to tell your story about living with a rare disease, they have a place for that.

The US page: http://rarediseaseday.us . A very cool feature on the US site (may be on the international site, too, but I didn't see it) is this: Nominate a researcher to the Rare Disease Research Hall of Fame
http://rarediseaseday.us/take-action-now/research-hall-of-fame/ . What a great way to recognize hard work conducted by researchers bent on locating cures and treatments for the rare diseases we wear?!
 
Who links to my website?