Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up. A recent CNBC article called “The human side of the Obamacare debate”… Continue reading Loud and clear: The patient voice on the ACA
Category: Patient Experiences
Member Kimberly opens up about living with a rare disease
Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that… Continue reading Member Kimberly opens up about living with a rare disease
“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story
“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune. The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed… Continue reading “I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story
Member Chris finds the uplifting side of type 1 diabetes
“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use. Chris was diagnosed with diabetes at… Continue reading Member Chris finds the uplifting side of type 1 diabetes
Communicating drug risks/benefits so the message really gets through
Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for… Continue reading Communicating drug risks/benefits so the message really gets through
“I feel it needs to be told”: Member Cathy shares a memory
Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory. Here’s what she had to say… “I have been… Continue reading “I feel it needs to be told”: Member Cathy shares a memory
What do PatientsLikeMe members think about the Affordable Care Act?
With a new administration in Washington, the future of “Obamacare” is uncertain. So we wanted to know: What do patients think about potential changes to the Affordable Care Act (ACA)? More than 2,000 PatientsLikeMe members recently shared their thoughts in the largest patient poll on the 2010 health care law. Previous large-scale polls about the… Continue reading What do PatientsLikeMe members think about the Affordable Care Act?
Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”
Say hello to Christopher (ChrisBC), a father, musician and Purple Heart recipient living with PTSD and bipolar disorder. We recently caught up with him to hear about how PTSD affected his marriage and how his diagnosis pushed him get the help he needed and connect with his feelings. Keep reading to learn how he copes… Continue reading Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”
Meet Lindsay from the PatientsLikeMe Team of Advisors
Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. Keep reading to get to know her story and how she tackles… Continue reading Meet Lindsay from the PatientsLikeMe Team of Advisors
Keeping it fresh for heart health month
Did you know February is Heart Health Month? Although heart disease is the leading cause of death for both men and women in America, it’s also one of the most preventable diseases. It may seem impossible to stay on top of your heart health, but remember, sometimes the slightest change can make a huge impact!… Continue reading Keeping it fresh for heart health month