We’ve had the pleasure of featuring many PatientsLikeMe members on the blog, but never one with a nickname quite like this. Anna is living with MS and we caught up with her to talk about coping, finding support, her motorized scooter and where the name “Mad Anna” comes from. Read below to see what life… Continue reading “MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS
Category: Patient Experiences
Research, support and hope for spinal muscular atrophy
If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological… Continue reading Research, support and hope for spinal muscular atrophy
More than skin deep
August might mean the summer’s almost over, but the effort to raise awareness for psoriasis is going strong. It’s Psoriasis Awareness Month, sponsored by the National Psoriasis Foundation (NPF), and everyone is working to eliminate stigma and dispel the myths surrounding the skin condition. Starting with the basics Q: What is Psoriasis?… Continue reading More than skin deep
PatientsLikeMe (mid-year) news report
We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights: In the news Innovators in Health Data… Continue reading PatientsLikeMe (mid-year) news report
PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)
Patients To Share Their Experiences, Help Researchers Better Characterize Disease And Develop Treatment Strategies CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an… Continue reading PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)
Seeing [MS]: The invisible symptoms – blurred vision
Hidden – invisible – unnoticed. That’s what symptoms for many living MS are like. So how do you explain them to people who don’t understand? The Multiple Sclerosis Society of Australia (MSA) decided to stop just talking about them and start showing what it’s like to live with MS. Their project is called Seeing [MS]… Continue reading Seeing [MS]: The invisible symptoms – blurred vision
“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS
If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to… Continue reading “In my own words” – PatientsLikeMe member Tam writes about (your) life with MS
“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve… Continue reading “In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
Food for thought: July (chocolate) edition
Calling all dark chocolate lovers! Did you know there could be a benefit to eating it besides tantalizing our taste buds? A new study started to get some buzz in the MS community forum when a member posted about how it claimed those who regularly consume dark chocolate may enjoy improved walking ability. Here’s what… Continue reading Food for thought: July (chocolate) edition
The Patient Voice- PF member Bryan shares his story
Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.… Continue reading The Patient Voice- PF member Bryan shares his story