If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition. Lupus… Continue reading Taking action for lupus awareness in May
Tag: PatientsLikeMe
What lies ahead – PatientsLikeMe member John shares his journey with ALS
It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and… Continue reading What lies ahead – PatientsLikeMe member John shares his journey with ALS
“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I
We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since. She shared… Continue reading “In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I
Making fibromyalgia visible this May
The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May. Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia –… Continue reading Making fibromyalgia visible this May
It’s time to recognize National Anxiety and Depression Week
We already posted about raising awareness for mental health, and now we’re recognizing National Anxiety and Depression Awareness Week (May 5-10). Since 1994, the week has been organized by Freedom from Fear, a national non-profit focused on raising awareness for depression and anxiety. If you haven’t heard much about these two conditions, here are some… Continue reading It’s time to recognize National Anxiety and Depression Week
A day in the life of Software Engineer Jonathan Slate
Our members share a lot about their unique health journeys and experiences here on the blog. Just recently, Kim spoke about her shock with MS, Betty talked about her frustration finding the right diagnosis, and Lori’s been sharing about life on the lung transplant list. And as part of our ongoing “A day in the… Continue reading A day in the life of Software Engineer Jonathan Slate
“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™
Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy… Continue reading “Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™
Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results
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… Continue reading Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results
Food for Thought: Recipes, Diets and Tips
What’s for dinner? Does this phrase haunt you the same way it does us? It is hard to come up with something to eat for every meal each day, especially if you have dietary restrictions due to your condition. If you feel like you are stuck in a meal rut, the PatientsLikeMe community is here… Continue reading Food for Thought: Recipes, Diets and Tips
“I would just like to understand the ‘why’” – a conversation with PD community member dropsies
Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in… Continue reading “I would just like to understand the ‘why’” – a conversation with PD community member dropsies