Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors and is living with autonomic neuropathy, a rare disease which forced an end to her career as a Registered Nurse. In part 1 of her insurance series, she tells the story of how eight of her doctors became out-of-network overnight, and how she navigated… Continue reading Team of Advisors member Kimberly shares part two of her insurance series
How cancer affects diet + pointers for trying to eat well
Many PatientsLikeMe members have talked in the forum about the dietary impact of lung cancer treatment and how it has hindered their eating. As many as 40 to 60 percent of patients with lung cancer experience unintentional weight loss. Eating well (or as best you can) during and after cancer treatment can help you keep… Continue reading How cancer affects diet + pointers for trying to eat well
MS and Bowel Incontinence
More than 14,000 members living with MS report bowel problems (difficulty in passing feces including constipation, bowel incontinence [loss of bowel control], and diarrhea). So, what’s the deal with bowel incontinence and MS? What can you do to manage symptoms? We checked in with Meaghan Zisk, RN MPH, a nurse and Health Data and Patient… Continue reading MS and Bowel Incontinence
“Dealing and healing” together: Karl and Angela Robb team up with PatientsLikeMe and share about living with young-onset Parkinson’s disease
PatientsLikeMe is pleased to announce a new collaboration with Karl and Angela Robb, the husband-and-wife team behind Karl’s blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and the authors of two books. You might’ve already seen Karl’s #MoreThan story. Karl and Angela recently shared even more with us in… Continue reading “Dealing and healing” together: Karl and Angela Robb team up with PatientsLikeMe and share about living with young-onset Parkinson’s disease
Want to know more about Radicava (edaravone)? Here’s a snapshot:
With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown… Continue reading Want to know more about Radicava (edaravone)? Here’s a snapshot:
5 tips for practicing self-care when your chronic illness is trying to take over
As a woman with bipolar disorder I and PTSD, I can pretty safely say that no two days are the same. There are days when the world is sunshine and roses; life is grand! Then there are days when the inside of my brain is trying to run the show without me, and it’s leaving… Continue reading 5 tips for practicing self-care when your chronic illness is trying to take over
Ocrevus: You asked, we answered
Last month, we asked the MS community to share their questions about Ocrevus. Now, PatientsLikeMe’s Maria Lowe, Pharm.D., BCPS, sheds more light on what it is, how it works and what patients need to know. Maria’s rundown is meant to give you more context so you can have better conversations with your care team –… Continue reading Ocrevus: You asked, we answered
From “What happened to you?” to “You’re so inspirational”: 5 ways Anne navigates stigma as a wheelchair user
Member Anne Thomas (AnneBT), a civil rights attorney turned professional storyteller, has shared her stories with everyone from elementary schoolers and medical students to corporate leaders and World Bank officials. Anne sustained a spinal cord injury in a car accident at age 18. Her wheelchair is often the first thing people notice about her, so… Continue reading From “What happened to you?” to “You’re so inspirational”: 5 ways Anne navigates stigma as a wheelchair user
“I promise not to look upon myself with the scornful eyes of my past” – PatientsLikeMe’s Becca shares her promise
Becca Getto is an Associate Product Manager at PatientsLikeMe, and is recovering from an eating disorder. During her time in Monte Nedo Laurel Hill treatment program, she wrote a poetic and moving promise to herself, and in it she shares her past struggles and hopes for the future. Becca is more than her condition: she’s… Continue reading “I promise not to look upon myself with the scornful eyes of my past” – PatientsLikeMe’s Becca shares her promise
10 hot weather and sun-safety pointers for people with lung cancer
The dog days of summer have arrived, so we’ve rounded up some tips for handling the weather’s impact on breathing troubles and the side effects of chemo, radiation and surgery for lung cancer patients. Hot weather tips for people with breathing issues Those with lung disease have their lungs working harder in the summer air.… Continue reading 10 hot weather and sun-safety pointers for people with lung cancer