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… Continue reading “No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis
Tag: PatientsLikeMe
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.… Continue reading The Patient Voice- PF member Bryan shares his story
“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3
Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)! Eleanor talks about her relationship with her psychiatrist Jon and how they recently… Continue reading “In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3
Patients as Partners: Managing High Blood Pressure questionnaire results
In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about… Continue reading Patients as Partners: Managing High Blood Pressure questionnaire results
Keeping up awareness for PTSD
Back in the beginning of June, we posted about PTSD Awareness Month, and now, we’re keeping the awareness going strong for PTSD Awareness Day. To help put a face on PTSD, we shared a bunch of videos from AboutFace, a website produced by the National Center for PTSD that’s all about telling real stories… Continue reading Keeping up awareness for PTSD
If you could share one thing… -Steven’s inspiring answer
PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness.… Continue reading If you could share one thing… -Steven’s inspiring answer
“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2
Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member… Continue reading “In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2
One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury
Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to… Continue reading One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury
“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS
As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about… Continue reading “Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS
Help make migraines visible in June
Migraines aren’t just simple headaches – they are intense, debilitating head pains that can last for a very long time if left untreated. That is just one reason why June is National Migraine Awareness Month. This month, everyone is working to get the word out about what it’s really like to experience a migraine. … Continue reading Help make migraines visible in June