February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.1 This year’s theme is all about elevating the patient voice, so we caught up with… Continue reading “We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day
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2016 National Compassionate Caregiver of the Year Award now accepting nominations
A warm smile. An assuring word. A difficult message delivered with empathy. Has a doctor or other healthcare professional ever made a difference in your life? If you know someone who embodies compassionate care, our partners at The Schwartz Center for Compassionate Healthcare want to hear about it. Their National Compassionate Caregiver of the Year (NCCY) Award… Continue reading 2016 National Compassionate Caregiver of the Year Award now accepting nominations
Touched with fire: Harnessing the fire of bipolar
Over the last few weeks, new PatientsLikeMe member Paul has been opening up about living with bipolar and how this condition inspires his art. Touched with Fire, a debut feature film now playing in select theaters, was written, edited, directed and scored by him and draws on his personal experiences. Discovering Kay Jamison’s book of… Continue reading Touched with fire: Harnessing the fire of bipolar
Meet Cyrena from the PatientsLikeMe Team of Advisors
Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology. Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a… Continue reading Meet Cyrena from the PatientsLikeMe Team of Advisors
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
Food for Thought: A heart-healthy recipe for Heart Month
February is Heart Month, a time to raise awareness for the leading cause of death in Americans: heart disease. Healthy eating can lower your risk for heart problems, so for this edition of Food for Thought, we’re sharing a recipe from the American Heart Association. Give this Thai chicken soup a try — it’s… Continue reading Food for Thought: A heart-healthy recipe for Heart Month
Meet Doug from the PatientsLikeMe Team of Advisors
We’d like to introduce you to Doug, another member of your 2015-2016 Team of Advisors. Doug is an actor, teacher and writer living with major depressive disorder (MDD). He’s been tracking his health on PatientsLikeMe since 2008. Doug feels there is a lot of stigma surrounding the term “mental illness,” and shares that one of… Continue reading Meet Doug from the PatientsLikeMe Team of Advisors
Touched with fire: A meaning behind the suffering
We’ve been talking with new PatientsLikeMe member Paul, whose debut feature-film, Touched with Fire – inspired by his experiences living with bipolar – opened last week in select theaters. For Paul, the road to diagnosis was more like being on a rollercoaster. Years of using marijuana seemed to stimulate his creativity at film school, but… Continue reading Touched with fire: A meaning behind the suffering
National Donor Day: Changing lives on both sides
“Be Mine.” It’s the mantra of Valentine’s Day, but today we’re honoring those who’ve said, “Have mine.” February 14 is also National Donor Day, and it’s all about recognizing the most precious valentine of all: the gift of life. For every organ, tissue, marrow, platelet and blood donation, there are two sides to the story.… Continue reading National Donor Day: Changing lives on both sides
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