Crohn’s Disease

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

Leave a Comment / Conditions, Crohn's Disease, Ulcerative Colitis / 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: Join the CCFA Thunderclap on social media, tomorrow at 12pm ET. Using the hashtag “#IBDAware,” share what awareness means to you on Instagram, Facebook or Twitter Tomorrow, join CCFA’s National Call-In Day and urge your legislator to join the Congressional Crohn’s & Colitis Caucus 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 …

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Throwing it back this Thursday for Crohn’s and Colitis awareness week

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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

1 Comment / ALS, Crohn's Disease, Epilepsy, Idiopathic pulmonary fibrosis, Organ Transplants, Patient Experiences, Pulmonary fibrosis, Ulcerative Colitis / 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.

“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week

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Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our 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. David just visited all of us in the PatientsLikeMe office this past September, and both he and Maria shared their health journeys with the entire team so we could learn more about Crohn’s first-hand. And most recently, Maria took some time to jot down her experiences to share on the blog and help raise awareness this week. Check it out! Can you tell the community a little about what you do at PatientsLikeMe? I am a pharmacist, and at PatientsLikeMe, I am part of both our Health Data Integrity team and our Research team. My main role is to help provide some clinical perspective to the …

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