In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US). Today we’d like to spotlight one of these lesser-known conditions: multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and… Continue reading Recognizing Multiple System Atrophy (MSA Parkinson)
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part II)
In Part I of our interview, we learned how Dee came to write The Dumbest Things Smart People Say to Folks with MS, how PatientsLikeMe’s MS Community was a critical part of her research and, most importantly, her “top three dumbest things” not to say. Today we find out more about Dee’s personal journey with… Continue reading Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part II)
Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part I)
Continuing our observance of MS Awareness Week, we’d like to introduce you to longtime PatientsLikeMe member Dr. Dee Kite (“CoachDee”), who has been living with multiple sclerosis (MS) for over 23 years. A life coach who specializes in MS patients, Dee became interested in social awareness, or how best to talk and interact with a… Continue reading Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part I)
MS Awareness Week: Real-World Descriptions (and a Poem!) from Our MS Community
We kicked off MS Awareness Month by sharing some key facts we’ve learned from our MS community (26,000+ members and counting). Now, we are digging a bit deeper in honor of MS Awareness Week. You’ve already heard about common MS symptoms as well as frequent topics in our MS forum. But what it is really like to… Continue reading MS Awareness Week: Real-World Descriptions (and a Poem!) from Our MS Community
Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
You may remember our interview with ALS advocate Debra Quinn from last fall. Today, we’d like to introduce you to another ALS patient activist in our midst: Tom Murphy, a PatientsLikeMe member since January 2011. As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have… Continue reading Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
It’s World Kidney Day. How Are Your Kidneys?
Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health. For example, did you know that it’s our kidneys’ job to remove toxins… Continue reading It’s World Kidney Day. How Are Your Kidneys?
What Do You Know About Multiple Sclerosis?
March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves. This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the… Continue reading What Do You Know About Multiple Sclerosis?
Rare Disease Day: Together, We Can Do More
Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries. (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.) What’s a rare disease, you ask? It’s a… Continue reading Rare Disease Day: Together, We Can Do More
A Peek at the February Newsletter for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up… Continue reading A Peek at the February Newsletter for Members
E-Patient Dave’s Top Internet Resources
We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer. Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend. Case in point, our President and Co-Founder Ben Heywood was on… Continue reading E-Patient Dave’s Top Internet Resources