3 posts in the category “Ulcerative Colitis”

Crohn’s & Colitis Awareness Week: Are you #IBDAware?

Posted December 2nd, 2015 by

Image courtesy of the Crohn’s & Colitis Foundation of America

This week (12/1 through 12/7) is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants to know what awareness means to you, asking, “Are you #IBDAware?”

Crohns disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect 1.6 million Americans.[1] Though both are types of inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis are not one and the same. Symptoms are similar, but the areas affected in the gastrointestinal tract differ.[2] To learn more about the two conditions, the CCFA website has several resources to help make you #IBDAware.

During Crohn’s & Colitis Awareness Week, there are a number of ways you can help the CCFA and the patient community raise awareness for both conditions:

For the CCFA and the IBD community, raising awareness for Crohn’s disease and ulcerative colitis is a year-round effort. Learn how you can get involved!

Don’t forget – you can connect with more than 3,400 PatientsLikeMe members living with Crohn’s disease, and more than 1,100 PatientsLikeMe members living with ulcerative colitis.

Let’s be #IBDAware, together.

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.