What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years… Tips For A Newly Diagnosed SLE Patient “This… Continue reading Lupus Diagnosis and Lupus Self Test: Member Hetlena’s Pointers For Her Old (Newbie with SLE) Self
Category: Patient Experiences
5 must-watch TED Talks Mental Health
Ever watch TED Talks? TED is a nonprofit “devoted to spreading ideas, usually in the form of short, powerful talks (18 minutes or less).” We’ve rounded up some of the top health-related videos from the TED series (1,700+ talks and counting) that might resonate or give you food for thought. Phil Hansen – “Embrace the shake” Hansen developed… Continue reading 5 must-watch TED Talks Mental Health
Healthcare = hot election topic. Check out some Election Day basics
Ready to cast your ballot? Election Day is almost here and recent polls show that healthcare is one of the top issues on voters’ minds. Here’s some quick election-related info for you. Election Day and voting basics – Tomorrow (November 6, 2018) is a general election for most states, except Louisiana (where November 6 is a primary and December 8… Continue reading Healthcare = hot election topic. Check out some Election Day basics
“In Claire fashion”: Claire Wineland + organ donation with a health condition
Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition.… Continue reading “In Claire fashion”: Claire Wineland + organ donation with a health condition
The Pain Scale 1 to 10 falls short
As Pain Awareness Month (September) comes to a close, we’re exploring how pain is subjective, and expressing it using the classic 1-to-10 or “smiley face” scale can be tricky. What are the shortcomings of these scales? And what can help you communicate better with your doctor? Pain scale problems NPR recently reported about the trouble with… Continue reading The Pain Scale 1 to 10 falls short
What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more
“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house… Continue reading What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more
Fundraising for a health-related charity walk/run? Get sponsored by PatientsLikeMe!
Looking for ideas for raising more money for an upcoming cancer walk, MS bike ride, or other health-related charity event where you’ll be hitting the streets? Learn more about PatientsLikeMeInMotion! It’s a program that sponsors you and your team as you walk, run, cycle (etc.) with a nonprofit organization to raise funds and awareness for your… Continue reading Fundraising for a health-related charity walk/run? Get sponsored by PatientsLikeMe!
Why is dietary advice so all over the place? Nutrition experts explain
If you’re confused about what kind of milk to drink, what type of cooking oil is “healthiest” or whether the Mediterranean diet is the ticket to heart health, you’re not alone. Nutrition experts dig into the complexity of dietary research. Digesting dietary advice The constant churn of nutrition news, books and blog posts — combined… Continue reading Why is dietary advice so all over the place? Nutrition experts explain
Advance directives: What are they and why should you have one?
If you find talking about end-of-life care and advance directives isn’t easy, you’re not alone. One 2013 survey by The Conversation Project found that while 90% of respondents said talking about it with loved ones is important, only 27% actually started the conversation. And according to another recent study, as few as 38% of patients living with a… Continue reading Advance directives: What are they and why should you have one?
Getting back in the groove — 5 hacks + hints for routines that work
Even if you haven’t been a student for several years, back-to-school season feels like the time to get back into a routine. What’s involved in a good routine? And what are the potential health perks of a basic regimen? See what the research shows, and join PatientsLikeMe to swap ideas with other members in this forum chat. How… Continue reading Getting back in the groove — 5 hacks + hints for routines that work