Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in… Continue reading The Theory of Everything
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
What’s your epilepsy story?
That’s what everyone’s asking this November during National Epilepsy Awareness Month. If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition. What are three things you need to know about epilepsy? 1 It’s a condition that affects the nervous system and causes… Continue reading What’s your epilepsy story?
A decade of psoriasis awareness
Today marks the ten-year anniversary of World Psoriasis Day, a day with four goals: raise awareness for the condition, improve access to treatment, increase understanding of known information and build unity among the global psoriasis community. And after ten years of raising awareness, it’s time to step it up a notch. Tomorrow, the International Federation of… Continue reading A decade of psoriasis awareness
Getting to know our 2014 Team of Advisors – Lisa
A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. About Lisa (aka lcs) Lisa’s recent work experience… Continue reading Getting to know our 2014 Team of Advisors – Lisa
Depression Awareness Month- What does it feel like?
Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum. It gives you a feel of the many… Continue reading Depression Awareness Month- What does it feel like?
“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines
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
“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