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“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

11 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about […]

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What lies ahead – PatientsLikeMe member John shares his journey with ALS

1 Comment / ALS, Patient Experiences / By

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I

2 Comments / Bipolar disorder, Patient Experiences / By

  We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since. She shared

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“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

1 Comment / Multiple Sclerosis, Patient Experiences / By

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy

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The Patient Voice- Parkinson’s member Ed shares his story

1 Comment / Parkinson's Disease, Patient Experiences / By

  Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with

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“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

2 Comments / Parkinson's Disease, Patient Experiences / By

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in

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PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Patient Experiences / By

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome

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“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

3 Comments / Patient Experiences, Pulmonary fibrosis / By

  This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made

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“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis

7 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused

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“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza

2 Comments / Conditions, Multiple Sclerosis, Patient Experiences / By

Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and

“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza Read More »

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