While the healthcare industry has attempted a more patient-centric approach over the last 20 years, consumers today demand even more from companies, led in large part by the transformation of traditional retail consumer experiences, such as Amazon and Uber. As a result, better patient outcomes are starting to become expected rather than just wished or… Continue reading Taking Control of Your Health Data and Why It Matters
Category: Patient Experiences
4 Theme Park Tips for Physically Disabled People
Roller coasters, water slides, tilt-whirls, and Ferris wheels are all exciting ways to spend your summer afternoon, but when you use a wheelchair, these options might not be accessible to you. This does not mean that you should cancel your next trip to a theme park. In fact, The American Disabilities Act has set an… Continue reading 4 Theme Park Tips for Physically Disabled People
BYO-BBQ: Navigating a Cookout with Dietary Restrictions
If you have a chronic condition, enjoying summertime social events like backyard BBQs can be challenging. The burgers, pasta salads, and custom cocktails are often tempting, but they can trigger your symptoms and lead to health flair-ups. Good news – your dietary restrictions do not have to end all your fun. With just a little… Continue reading BYO-BBQ: Navigating a Cookout with Dietary Restrictions
From Lupus Diagnosis to Fearless Patient Advocate
Meet Alyshia Alyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose.… Continue reading From Lupus Diagnosis to Fearless Patient Advocate
How to Tell Friends and Family About a Difficult Diagnosis
Receiving a difficult diagnosis can leave you with a mix of complex emotions and saying it out loud to others makes it feel even more real. Sharing your illness with friends, family members, and acquaintances can be as challenging as getting the news yourself in the first place. Therefore, it’s essential to learn how to… Continue reading How to Tell Friends and Family About a Difficult Diagnosis
Lupus Advocate and PatientsLikeMe Team of Advisors Member, Juana Mata
“Living with lupus [a systemic autoimmune disease] is difficult. I thrive by staying positive,” says 2019 Team of Advisors member, Juana (@Juanymata). Advocating on behalf of lupus patients like herself is one key way Juana stays positive. Off and Running Only months after being diagnosed with rheumatoid arthritis and systemic lupus erythematosus, Juana Mata and her two sisters formed a team to… Continue reading Lupus Advocate and PatientsLikeMe Team of Advisors Member, Juana Mata
ASMR – The Phenomenon Everyone’s Whispering About
Chills. Goosebumps. Tingles. “Autonomic sensory meridian response” or ASMR is described as a pleasurable wave of calm that comes to some people during exposure to gentle actions and/or sounds: think whispering, tapping fingernails or turning pages. These ordinary audio and visual triggers can inspire a deeply soothing effect on many people – making ASMR potentially… Continue reading ASMR – The Phenomenon Everyone’s Whispering About
Easy Listening: Podcasts for Relaxation
Podcasts are super popular, so let’s chat about what helps you chill out…with your earbuds in. Whose voices and which topics or types of podcasts do you find most de-stressing? Take a look at what folks around the web and here in the PatientsLikeMe forums have to say about podcasts and ideas for “easy listening.” Ideas from… Continue reading Easy Listening: Podcasts for Relaxation
“Smart” Gear for Cold Hands Due to Raynaud’s Disease?
Member Julia (mjguimaraes), a product designer in Montreal who’s living with Raynaud’s disease and multiple autoimmune conditions, is creating hand-warmers and other smart gear intended to help patients. She even involved fellow PatientsLikeMe members in shaping her first product. What’s in the works? Check it out! Helping (Cold) Hands Julia is originally from Brazil and began to… Continue reading “Smart” Gear for Cold Hands Due to Raynaud’s Disease?
Keto + other diet trends: Healthy or hype?
Keto. Carnivore. Fasting. What should you know about these diet buzzwords and the potential benefits or risks, especially when you’re living with an existing or chronic health condition? Take a peek (and always talk with your doctor before making big dietary changes). 3 Hot Diet Trends In 2019 According to Google Trends data (accessed in early 2019),… Continue reading Keto + other diet trends: Healthy or hype?