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
Category: Patient Experiences
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?
See our members’ online art show!
PatientsLikeMe members have a lot in common beyond their experiences with their health conditions. For example: a love of creativity and visual arts. For the second year in a row, PatientsLikeMe members have contributed to an online community art show, hosted in our Mental Health and Behavior forum but open to all members. With their… Continue reading See our members’ online art show!
Meet our 2019 Team of Advisors!
We’re excited to announce the nine members who have been selected to join the 2019 Team of Advisors! This group of active members will be collaborating with PatientsLikeMe in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to us and our… Continue reading Meet our 2019 Team of Advisors!
Supplement safety smarts
It’s easy to see the temptation of taking dietary supplements. Getting vitamins, minerals and herbs or other “health foods” in pill form sounds simple. And some of the products’ claims — “Live longer!” or “Have more energy!” — may seem enticing. But even though most supplements don’t require a prescription, it’s best to check with… Continue reading Supplement safety smarts
Advocacy 101: See our new guide!
Interested in getting into advocacy for your health condition community this year? Raising your voice to boost awareness about your condition or the reality of being a patient takes courage. Yet it’s pretty simple to get started with advocacy, so together with members of our Team of Advisors (a team of highly active members and… Continue reading Advocacy 101: See our new guide!