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.
- Filed Under: Crohn's Disease, Openness
- Tags: Awareness, CD, colitis, community, Crohn's, Crohn's and Colitis Foundation of America, Crohn's disease, disease, Foundation, Lowe, Maria, Maria Lowe, PatientsLikeMe, TBT, throwback, Throwback Thursday, thursday, UC, ulcerative, ulcerative colitis, week
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.
- Filed Under: ALS, Crohn's Disease, Epilepsy, Idiopathic pulmonary fibrosis, Openness, Organ Transplants, Pulmonary fibrosis, Ulcerative Colitis
- Tags: ALS, amyotrophic lateral sclerosis, arthritis, as, CD, condition, Crohn's disease, Epilepsy, exchange, Idiopathic pulmonary fibrosis, IPF, Ken Wallston, Management, Medical, open, Open Research Exchange, ORE, partners, patients, Patients as Partners, PatientsLikeMe, Perceived, PF, PMCSMS, Post-Traumatic Stress Disorder, PTSD, Pulmonary fibrosis, RA, Research, rheumatoid, rheumatoid arthritis, Scale, Self, transplant, UC, ulcerative colitis, Vanderbilt University