Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife… Continue reading “Hope makes us strong.” Cathy opens up for National Family Caregivers Month
Category: Patient Experiences
Lung Cancer Awareness Month: An interview with member Clare
November is Lung Cancer Awareness Month, and to share some insight into what it’s like to live with this condition, we talked to member Clare (Riverdale). When she was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made… Continue reading Lung Cancer Awareness Month: An interview with member Clare
Barry shares his story for National Diabetes Month
November is National Diabetes Month, and this year, we caught up with Barry (bjf2000): history lover, grandfather and member of the diabetes community. Below, see what Barry says about his journey to diagnosis (“a flipping mess”), what it’s like to manage multiple conditions and becoming his own advocate. Tell us a little about yourself. What… Continue reading Barry shares his story for National Diabetes Month
“I’m still fighting for a good cause, just on a different battlefield” — Member Shanon opens up for Veterans Day
PTS member Shanon (sgreer) is a veteran of the US Army, and this Veterans Day, we’re sharing his story to honor those who’ve served and spread more awareness and understanding for the millions who are living with chronic conditions. Shanon is a police officer in Giddings, TX. When we caught up with him, he shared… Continue reading “I’m still fighting for a good cause, just on a different battlefield” — Member Shanon opens up for Veterans Day
“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month
September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having… Continue reading “I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month
Patients as Partners: How Phyllis is bringing the patient perspective to future doctors
Team of Advisors member Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. In the latest edition of of our Partnership Principles series, she tells us how she works with med school students at the University of Pennsylvania in a patient shadowing program. The goal is to help the next generation… Continue reading Patients as Partners: How Phyllis is bringing the patient perspective to future doctors
Patients as Partners: An open letter from Craig to the “normals”
We’ve been hearing from members about their health journeys. For Craig, who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients. Below, Craig… Continue reading Patients as Partners: An open letter from Craig to the “normals”
Patients as Partners: Member Peggy on the diagnosis journey (Part I)
Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy digs deeper into one area where strong relationships are key: getting diagnosed. Peggy draws from her own experience with kidney cancer and breast cancer to answer… Continue reading Patients as Partners: Member Peggy on the diagnosis journey (Part I)
“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month
In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors! Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune… Continue reading “Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month
Study results: What patients like you said about sleep medications
Over a year ago, we partnered up with Merck Pharmaceuticals to learn more about insomnia and sleep medications. More than 1,200 PatientsLikeMe members responded to questions about how long they’ve had sleep problems, what treatments they’re using, what interferes with sleep most and what their overall quality of sleep is like. Here’s what we uncovered… Continue reading Study results: What patients like you said about sleep medications