Alyshia Merchant knows first-hand how lupus can affect you inside and out. After her diagnosis in 2012 and struggles with visible symptoms and self-esteem, she launched an organization called Making Lupus Look Good, which provides wigs and “glam sessions” to people with lupus-related hair loss and other symptoms. The organization currently serves people in Alyshia’s home… Continue reading Lupus Weight Gain: Q&A with the founder of Making Lupus Look Good
patientslikeme
5 Tips for Life After Lung Cancer Surgery
Your body just went through a significant afront, and returning to regular life at home after lung cancer surgery can be daunting. Hopefully, you have a support network in place to help you adjust. But, if you could use an extra hand on your back as you recover, we are here to remind you that… Continue reading 5 Tips for Life After Lung Cancer Surgery
“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
A possible Parkinson’s disease/melanoma link? Time for a skin check
Now that summer has passed, have you had your skin examined? Studies have shown that people with Parkinson’s disease (PD) may have an increased risk for melanoma, so skin screenings are extra-important. Take a look at recent research and get some tips on monitoring your moles and skin. Studies show… A 2017 Mayo Clinic study found that… Continue reading A possible Parkinson’s disease/melanoma link? Time for a skin check
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
Driving with Parkinson’s disease: Safety considerations + turning over the keys
Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around. Considerations for driving with PD + 7 questions to ask yourself “You… Continue reading Driving with Parkinson’s disease: Safety considerations + turning over the keys
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?
“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care
PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the… Continue reading “Breaking up” with a doctor after 14 years — Bernadette’s journey to better care