Member Julia (mjguimaraes), a product designer in Montreal who’s living with Raynaud’s disease and multiple autoimmune conditions, is creating hand-warmers and other smart gear intended to help patients. She even involved fellow PatientsLikeMe members in shaping her first product. What’s in the works? Check it out! Helping (Cold) Hands Julia is originally from Brazil and began to… Continue reading “Smart” Gear for Cold Hands Due to Raynaud’s Disease?
Category: Patient Experiences
Keto + other diet trends: Healthy or hype?
Keto. Carnivore. Fasting. What should you know about these diet buzzwords and the potential benefits or risks, especially when you’re living with an existing or chronic health condition? Take a peek (and always talk with your doctor before making big dietary changes). 3 Hot Diet Trends In 2019 According to Google Trends data (accessed in early 2019),… Continue reading Keto + other diet trends: Healthy or hype?
Supplement safety smarts
It’s easy to see the temptation of taking dietary supplements. Getting vitamins, minerals and herbs or other “health foods” in pill form sounds simple. And some of the products’ claims — “Live longer!” or “Have more energy!” — may seem enticing. But even though most supplements don’t require a prescription, it’s best to check with… Continue reading Supplement safety smarts
Lupus Diagnosis and Lupus Self Test: Member Hetlena’s Pointers For Her Old (Newbie with SLE) Self
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
“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
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 the most common pain scales: Adam Rosette, a 33-year-old… 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
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?
MS & Vertigo: How do you cope?
Ever have a sudden loss of balance or feel like the room is spinning? You’re not alone —it’s a popular topic in the forum, and vertigo might be to blame. See what other members have shared about their experience with this symptom and how they cope. What’s vertigo? Vertigo is the feeling that you, or the… Continue reading MS & Vertigo: How do you cope?