PF

Shining the spotlight on pulmonary fibrosis

  You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis […]

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Let the world know about pulmonary fibrosis

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+

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“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in

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The Patient Voice- PF member Bryan shares his story

  Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

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

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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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at

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“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris

Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from

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PatientsLikeMe creates largest open registry of IPF patients in the world

Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community

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“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

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