What does sharing about health experiences and donating #dataforgood mean to her? “I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.
Category: Patient Experiences
Spreading the word for arthritis
Lupus? Check. Fibromyalgia and ME/CFS? Check. ALS, cystic fibrosis, Huntington’s disease, mental health, schizophrenia, anxiety and depression? Check! There’s been a ton of awareness going on in May, but there’s still one more theme to go – National Arthritis Awareness Month. This month, the Arthritis Foundation (AF) is encouraging us all to spread the word to… Continue reading Spreading the word for arthritis
“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
Dispelling the myths of schizophrenia
May is all about mental health awareness, and we’re continuing the trend by recognizing Schizophrenia Awareness Week (May 19 – 26). Schizophrenia is a chronic neurological condition that affects people’s sensory perceptions and sense of being, and it’s time to dispel the myths about the condition. Here are some myths and facts about schizophrenia from… Continue reading Dispelling the myths of schizophrenia
“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
Taking action for lupus awareness in May
If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition. Lupus… Continue reading Taking action for lupus awareness in May
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
Turning blue for Myalgic Encephalomyelitis Awareness
Did you know that today is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs)? CINDs include fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Lyme disease and Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome or ME/CFS). ME/CFS is tough to diagnose because there are no tests for it, and other conditions can cause very similar… Continue reading Turning blue for Myalgic Encephalomyelitis Awareness
“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
Four actions = cystic fibrosis awareness
You guessed it! Along with mental health, anxiety and depression, Huntington’s disease and fibromyalgia… May is also Cystic Fibrosis (CF) Awareness Month. Here are some quick facts about CF from the Cystic Fibrosis Foundation (CFF): CF is a genetic condition that primarily affects the lungs and digestive system. CF causes unusually thick, sticky mucus that… Continue reading Four actions = cystic fibrosis awareness