At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his… Continue reading A life well lived: Giving and sharing with PatientsLikeMe member Geof
Category: Patient Experiences
Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013
Rishi Bhalerao, our Program Director of Client Services, recently spoke about patient innovation at the 2013 TEDx conference in Springfield, MA. Rishi talked about how the path to innovation begins right with patients because they are the ones who live with a condition day-in and day-out. Their sharing helps bridge the gap from patient to… Continue reading Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013
“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week
Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our Health Data Integrity and Research Teams,… Continue reading “Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week
“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You… Continue reading “Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
Uncovering psoriasis with patients like you
This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who… Continue reading Uncovering psoriasis with patients like you
Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good… Continue reading Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn
Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect… Continue reading “I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn
“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease
Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a… Continue reading “My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease
“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of… Continue reading “Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does… Continue reading “Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013