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
Category: Patient Experiences
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 with Sjögren’s Syndrome
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. Here, Dana talks about the daily challenges of living with Sjögren’s Syndrome, an autoimmune disease often associated with rheumatoid arthritis. She also shares how she manages Sjögren’s along with her other conditions… Continue reading “Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience with Sjögren’s Syndrome
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
Leaning on loved ones—An interview with lung cancer member Clare
When Clare (Riverdale) 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 an effort to eat healthy and keep up the active lifestyle they led before. We recently connected with Clare, who emphasized “the value of a… Continue reading Leaning on loved ones—An interview with lung cancer member Clare
ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
Meet 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 and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. We took time to connect with her recently and… Continue reading ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month
So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members. Barbara shares how her thyroid issues… Continue reading “I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month
“Do not give up, find a reason to keep going.” – An interview with ALS member Lee
Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive… Continue reading “Do not give up, find a reason to keep going.” – An interview with ALS member Lee