Volunteering is a big part of the culture at PatientsLikeMe. Inspired by PatientsLikeMe members, who have made our online community a place to find support and answers about health, we do our best to give something back to our local community, too. This year, many of our staff members pitched in and gave their time […]
Have you ever seen your doctor’s clinical notes about you? (We’re not talking about your brief ‘after-visit summary,’ but the detailed notes the doctor or other healthcare provider writes later on.) PatientsLikeMe member Liz (thelizarmy) recently talked with us about OpenNotes, a movement to give patients easy access to their providers’ notes – like her 4,000+
The OpenNotes movement: Your right to read your doctors’ notes Read More »
The holidays are stressful enough for people living without illness. When you have a health condition, or care for someone who does, the hustle and bustle of this time of year – plus the sky-high expectations for a magical time – can be physically and emotionally draining. We’ve rounded up self-care tips to help you
Treat yourself: 6 self-care tips for the hectic holiday season Read More »
Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public. Then came the facemasks. The model, who hails from New Orleans but
Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is
From preclinical to approval: How clinical trials bring new treatments to market Read More »
Last month, we asked the MS community to share their questions about Ocrevus. Now, PatientsLikeMe’s Maria Lowe, Pharm.D., BCPS, sheds more light on what it is, how it works and what patients need to know. Maria’s rundown is meant to give you more context so you can have better conversations with your care team –
Ocrevus: You asked, we answered Read More »
Member Anne Thomas (AnneBT), a civil rights attorney turned professional storyteller, has shared her stories with everyone from elementary schoolers and medical students to corporate leaders and World Bank officials. Anne sustained a spinal cord injury in a car accident at age 18. Her wheelchair is often the first thing people notice about her, so
Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my
Cannabis for PD treatment? Member Ian says it’s something to shout about Read More »
Last December, patients like you came together to donate more than 476,000 health data points, including nearly 30,000 treatment reports and close to 120,000 symptom reports. The data that everyone selflessly donated has a heartbeat that will keep on giving – helping other patients like you and accelerating research. And because you helped us reach
Ryan and Emma’s stories: Make-A-Wish® Massachusetts and Rhode Island Read More »
PTS member Shanon (sgreer) is a veteran of the US Army, and this Veterans Day, we’re sharing his story to honor those who’ve served and spread more awareness and understanding for the millions who are living with chronic conditions. Shanon is a police officer in Giddings, TX. When we caught up with him, he shared
