13 Spring Clean Laundry Hacks when you have a Health Condition

Pain, fatigue and other symptoms can make spring cleaning and household chores… stink! We’ve rounded up some tips, tricks and life hacks for cleaning and doing laundry when you have a health condition. 1. Make a plan. Write out your cleaning to-do list (or find a free printable one online) and tackle your top priorities first.… Continue reading 13 Spring Clean Laundry Hacks when you have a Health Condition

Are we really more likely to cry when watching movies on planes? New study de-mystifies the urban legend

The Oscars have been awarded and spring travel is in full swing, which got us thinking about the urban legend that you’re more likely to cry watching a movie on a plane than on the ground. Is it just a myth or is there more to it? While celebrities, polls and pop culture have covered the phenomenon… Continue reading Are we really more likely to cry when watching movies on planes? New study de-mystifies the urban legend

What’s the right-to-try bill + possible pros and cons?

The U.S. House of Representatives recently passed legislation that could give terminally ill patients the “right to try” experimental treatments — so what’s the controversy? Catch up on the topic and share your thoughts below. “Right-to-try,” in a nutshell The “right-to-try” bill aims to give terminally ill patients who’ve exhausted all other treatment options quicker… Continue reading What’s the right-to-try bill + possible pros and cons?

Defining “good” health care: 2 new studies reveal patient perspectives

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define… Continue reading Defining “good” health care: 2 new studies reveal patient perspectives

Is there a medical gender gap? The not-so-brief history of sexism in medicine

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today. History of “hysteria” Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues. An Egyptian… Continue reading Is there a medical gender gap? The not-so-brief history of sexism in medicine

Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and Angela are the couple behind… Continue reading Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

PatientsLikeMe at the White House: A new initiative to give patients more control of their health data

Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in… Continue reading PatientsLikeMe at the White House: A new initiative to give patients more control of their health data

Living with a mental health condition? See these helpful pointers for your next job interview

Unsure of how to navigate that job interview? You’re not alone. Members have exchanged their experiences and strategies here on PatientsLikeMe — from worrying about how to control nervous twitches to advice about not oversharing. Read on for more info about what you need to disclose to your potential employer, and hear how other members get through… Continue reading Living with a mental health condition? See these helpful pointers for your next job interview

Pre-diagnosis limbo: “I knew something was wrong”

Before you were diagnosed with your condition, how long did you live in “limbo” with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or… Continue reading Pre-diagnosis limbo: “I knew something was wrong”

Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza… Continue reading Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”