Who needs another scarf or coffee mug? With the holiday shopping season upon us, PatientsLikeMe members are putting together a list of handy products and tools that can actually help people living with pain, fatigue, and other symptoms of chronic illness or aspects of aging. Check out the list below, for starters, and then join PatientsLikeMe or log… Continue reading Gift Guide: Gadgets for People with Health Conditions
Category: Patient Experiences
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 Health Care Directives: What They Are, Why They Matter, and How to Get One
An advance health care directive is a legal document that explains your medical wishes if you’re ever unable to speak for yourself. It can also name someone you trust, such as a loved one or a lawyer, to make health care decisions on your behalf. Contrary to what many believe, advance directives are not only… Continue reading Advance Health Care Directives: What They Are, Why They Matter, and How to Get 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?
“Not tonight”: How health conditions can affect your sex life + relationships
Personal (but important) question: How’s your sex life? Explore how your diagnosis (and symptoms and treatments) can impact your romantic relationships, see what members are saying about the topic on PatientsLikeMe — and learn what you can possibly do about love-life struggles. Intimacy, interrupted According to sexologists, people with a variety of health conditions can… Continue reading “Not tonight”: How health conditions can affect your sex life + relationships
MS constipation blues? See 12+ treatment options
Feeling “irregular” on the regular? Constipation is a common issue for people living with multiple sclerosis (MS), affecting as many as 40% of patients. Over 15,000 MS members on PatientsLikeMe report experiencing bowel problems and of those, about 47% have reported it as “moderate” or “severe” – take a look here. With help from our team of… Continue reading MS constipation blues? See 12+ treatment options