PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his… Continue reading “I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines
patientslikeme
Seeing [MS]: The invisible symptoms – hot and cold
Dimitri is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.” You are now seeing hot and cold Photographed by… Continue reading Seeing [MS]: The invisible symptoms – hot and cold
“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF
Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to… Continue reading “We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF
Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF
On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended… Continue reading Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF
MS members share about their PatientsLikeMeInMotion™ experiences
PatientsLikeMeInMotion™ is a way to celebrate our three star members (super health data donors) and sponsor them at events so that they can raise awareness for their condition. If you’re passionate about advocacy and you’re participating in a walk, run or other fundraiser on behalf of your condition, learn more and sign up right here. … Continue reading MS members share about their PatientsLikeMeInMotion™ experiences
You’re Not You
There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it. So it… Continue reading You’re Not You
PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors
Online Network Connects Patients, Offers Valuable Information and Tools CAMBRIDGE, Mass.—October 8, 2014—PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a… Continue reading PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors
Jamie delivers keynote presentation at DIA 2014
Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all… Continue reading Jamie delivers keynote presentation at DIA 2014
It’s time to recognize mental illness in October
Think about this for a second; according to the National Alliance of Mental Illness (NAMI) 1 in 4 people, or 25% of American adults, will be diagnosed with a mental illness this year. On top of that, 20 percent of American children (1 in 5) will also be diagnosed. And so for 7 days, October… Continue reading It’s time to recognize mental illness in October
Getting to know our 2014 Team of Advisors – Dana
Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and… Continue reading Getting to know our 2014 Team of Advisors – Dana