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
Category: Patient Experiences
Let’s talk about Huntington’s Disease
May is packed with mental health awareness, and we’re continuing to recognize neurological conditions through Huntington’s Disease (HD) Awareness Month. HD is a mental health condition that affects brain cells (neurons) and causes them to degenerate over time. According to the National Institute of Health (NIH), HD can only be passed down from parent to child… Continue reading Let’s talk about Huntington’s Disease
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
“Mind your health” – Recognizing mental health in May
This May marks the 65th anniversary of Mental Health Month, which has been observed by Mental Health America (MHA) since 1949. The MHA’s 2014 monthly theme is “Mind your health,” and it’s all about building public awareness for mental health and wellness while learning about the complex connections between the mind and the body. According… Continue reading “Mind your health” – Recognizing mental health in May
Speaking up for hope during ALS Awareness Month
May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers… Continue reading Speaking up for hope during ALS Awareness Month
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™
The Patient Voice- Parkinson’s member Ed shares his story
Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with… Continue reading The Patient Voice- Parkinson’s member Ed shares his story
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