4 posts tagged “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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Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

Share this post on Twitter and help spread the word for Crohn’s disease and ulcerative colitis.


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.


What Other Patients Are Saying About Solupred

Posted March 12th, 2011 by

Solupred is an international brand of prednisolone, a widely prescribed corticosteroid that modifies the body’s immune response and decreases inflammation. It is used to treat a host of inflammatory and autoimmune health conditions, including multiple sclerosis (acute exacerbations), organ rejection, lupus, psoriasis, asthma and ulcerative colitis.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, two patients report using Solupred currently while 68 patients report using another form of prednisolone.  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported prednisolone duration amongst current users is two years or more, while the most commonly reported dosage at PatientsLikeMe is 5mg daily.

Wondering about Solupred side effects?  Some of the commonly reported side effects of prednisolone include weight gain, heart palpitations, insomnia, dry eyes and abdominal bloating.  Check out the 22 treatment evaluations of prednisolone (the generic form of Solupred) submitted by our patients to gain even more insight.

JOIN PATIENTSLIKEME TODAY

Have you taken Solupred – or another brand of prednisolone?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

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