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

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

Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public. Then came the facemasks. The model, who hails from New Orleans but… Continue reading Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

From tomatoes to turmeric: Can foods fight inflammation?

Inflammation is a hot topic. What’s it all about? And what’s the scoop on certain diets, foods and supplements, such as turmeric, when it comes to fighting inflammation? What is inflammation? Not all inflammation is “bad.” Acute inflammation is part of the body’s natural way of defending itself from foreign substances like viruses, bacteria, cuts and splinters.… Continue reading From tomatoes to turmeric: Can foods fight inflammation?

GF + DF recipe from LupusChick: Berry Bliss Smoothie Bowl

Our partner Marisa Zeppieri-Caruana, founder of LupusChick, blogs about healthy cooking and living with lupus and other chronic conditions. Check out this gluten-free, dairy-free recipe she wanted to share with the lupus community (or anyone who’d like to try it) before berry season winds down! One of my favorite aspects about summer is seeing berries… Continue reading GF + DF recipe from LupusChick: Berry Bliss Smoothie Bowl

Bright ideas: Members share 7 head-to-toe tips for sun safety with lupus

With summer just around the bend, we’ve rounded up PatientsLikeMe members’ sun-safety and photosensitivity tips for people living with lupus. Photosensitivity is increased sensitivity to sunlight and other sources of ultraviolet (UV) light, sometimes causing a rash or other skin reaction. On PatientsLikeMe, thousands of people with lupus say they’ve experienced photosensitivity – more than… Continue reading Bright ideas: Members share 7 head-to-toe tips for sun safety with lupus

Teaming up with LupusChick to boost chronic condition awareness

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by… Continue reading Teaming up with LupusChick to boost chronic condition awareness

3 energy-saving tips for people with lupus

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member. Here’s a roundup of energy-saving tips from a few different… Continue reading 3 energy-saving tips for people with lupus

Meet Hetlena from the PatientsLikeMe Team of Advisors

Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness… Continue reading Meet Hetlena from the PatientsLikeMe Team of Advisors

PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven… Continue reading PatientsLikeMe Welcomes Next Patient Team of Advisors