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.”
Getting out of bed: The “One hour rule” and other tips
Does getting out of bed in the morning ever seem like an overwhelming task? You’re not alone. PatientsLikeMe members are talking about it a lot in the mental health forum. Read on to learn what’s worked for others on difficult mornings. Give yourself no more than an hour Elyse Raffery, contributor to The Mighty, shared… Continue reading Getting out of bed: The “One hour rule” and other tips
Is seasonal affective disorder real? Some call it “folk psychology”— others say it’s legit
Mental health experts first recognized seasonal affective disorder (SAD) — or depression that follows a seasonal pattern — in 1987. Some recent research has called SAD into question. What’s with the clashing theories? What do U.S. healthcare experts say, as of today? And how do people treat SAD? Read on. Questioning SAD Both culturally and… Continue reading Is seasonal affective disorder real? Some call it “folk psychology”— others say it’s legit
Lupus and vitamin D deficiency – get the lowdown
Vitamin D is nicknamed “the sunshine vitamin” because catching some rays on bare skin triggers your body to produce it naturally. But what if lupus-related sun sensitivity (not to mention the winter weather) restricts your sun exposure? Take a peek at some key info on vitamin D deficiency, plus learn some dietary sources of this… Continue reading Lupus and vitamin D deficiency – get the lowdown
The lowdown on generic MS medications
From FDA approvals to availability and safety, generic drugs are a popular topic in the PatientsLikeMe MS forum (more than 15 threads!). To help you stay in the loop about what generics are and what’s out there for MS, we checked in with our team of in-house health professionals. Here’s the scoop… Let’s start with… Continue reading The lowdown on generic MS medications
“You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book
“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it. Advocating for “Onlyness” Nilofer has been championing the idea of “Onlyness”… Continue reading “You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book