As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about… Continue reading “Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS
Tag: patient spotlight
“I know that it will pass eventually” – PatientsLikeMe member Jennifer shares about her PTSD
June is National Posttraumatic Stress Disorder (PTSD) Awareness Month, and recently, Jennifer (aka sortaborderline) spoke about her personal experiences with the neurological condition. She talked all about learning to roll with her triggers, leaning on her family and PatientsLikeMe members for support, and recognizing the relationship between her fibromyalgia, myalgic encephalomyelitis (ME/Chronic Fatigue Syndrome) and… Continue reading “I know that it will pass eventually” – PatientsLikeMe member Jennifer shares about her PTSD
“Just saying” – PatientsLikeMe member Shep talks frankly about his MS
The members of the multiple sclerosis (MS) community on PatientsLikeMe are very open when it comes to sharing about their journey, and shep0454 (aka Shep) is no exception. He recently spoke with us about his life with MS, and he pulled no punches when talking about his emotions after being diagnosed, the wonderful people he’s… Continue reading “Just saying” – PatientsLikeMe member Shep talks frankly about his MS
“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF
PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about… Continue reading “Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF
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
“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
“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
“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made… Continue reading “Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori