Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient… Continue reading How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Category: Multiple Sclerosis
What Part of MS Are You Most Afraid of?
Can facing your fears help you come to terms with them? That’s the idea behind a recent discussion in our multiple sclerosis (MS) forum, in which one member asked, “What part of MS are you most afraid of?” The answers poured in from dozens of MS members who found it cathartic to reveal their true… Continue reading What Part of MS Are You Most Afraid of?
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel
Surviving Multiple Sclerosis (MS)
It’s Men’s Health Week, and we’re featuring the perspectives of – you guessed it – men. Following tiredoftired’s guest post about depression on Monday, we are pleased to present this poignant essay by longtime PatientsLikeMe member and mentor Rick N, who has lived with multiple sclerosis (MS) for 23 years. I am a 58-year-old man… Continue reading Surviving Multiple Sclerosis (MS)
Someone Like Me
We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties. Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem. I recently met someone that happened to be just like… Continue reading Someone Like Me
What Do You Know About Endometriosis?
March is Endometriosis Awareness Month, which means it’s a good time to brush up on this common women’s health problem. For example, did you know that endometriosis gets its name from endometrium (en-doh-MEE-tree-um), the tissue that lines the uterus? Or that this often painful condition occurs when that tissue begins to grow in other places,… Continue reading What Do You Know About Endometriosis?
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
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?