lupus

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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. This innocuous comment would soon lead her to a life-altering discovery that she had Lupus nephritis, an autoimmune disease that threatened her health and quality of life. After multiple conversations with doctors who told her to get more sleep and take more vitamins, it took a fainting episode at work that landed her in the emergency room for her condition to be taken seriously. After a few tests, bloodwork, and a biopsy, her nephrologist officially diagnosed Alyshia with Lupus. Alyshia is not alone in having trouble getting an accurate diagnosis. Lupus can be challenging to identify because it impacts many different parts of the body and presents in a variety of ways. The Lupus Foundation of America has compiled a list of common symptoms and recommends you advocate for how you feel when you speak with your doctor. They also offer a helpful symptom questionnaire …

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Lupus Advocate Juana Mata

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 run in a local lupus fundraiser. They soon understood the pressing need for more support and useful information for patients, their families and caregivers. They also understood the need for more funding on the path to a cure. Knitting Communities of Hope Tejiendo Una Comunidad de Esperanza Less than two years later, the sisters launched Looms4Lupus.org, a support group to empower minority families affected by lupus to take charge of their lives and kindle hope. For nine years, they have been running bilingual monthly support groups and include art therapy sessions in the central San Gabriel Valley region of Los Angeles County, California. They support not only those living with the illness but also caregivers and loved ones. And just this year, they launched a Facebook Live video to broaden their reach. Advocating with Local, State & National Officials Beyond helping families through in person and virtual support groups, Juana advocates with officials at all levels of government …

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Jokiva Bellard's lupus diagnosis

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 now lives in Dallas, had to cover her airway with a mask to avoid infection because she was undergoing chemotherapy to treat lupus. “I was like, ‘Dang it – now people are really looking at me,” she says. But that was a turning point. “It was like God was telling me, ‘I’m going to show you that you’re going to love yourself, even if I have to force you to notice it.’” We recently talked with Jokiva about her experiences with lupus, finding her voice on social media, exposing her struggles and rising above online trolls. Jokiva’s lupus diagnosis Jokiva was 17 and a senior in high school when she started experiencing back pain and a rash, initially thought to be eczema. When the rash didn’t go away with prescription eczema cream and she also started having pain in her knees and legs, she saw multiple doctors and finally a …

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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. It may cause redness, swelling, heat and/or pain. The upside is, these symptoms are a sign that the body is responding after an injury or infection by triggering white blood cells and disease-fighting chemicals. But some “other” kinds of inflammation — like chronic inflammation (which may include constant low-grade or systemic inflammation) and inflammation from autoimmune disorders (where the body attacks its own healthy cells as if they’re foreign) — doesn’t always show visible or obvious symptoms and can play a more long-term and complex role, according to Mayo Clinic. Which diseases or conditions does it affect? Mounting research shows that inflammation is a common underlying factor (and possibly a cause) in many — perhaps even all — diseases. You’ve probably heard about the role of inflammation in arthritis or heart health. But researchers and doctors have also studied inflammation’s link to a wide range of other diseases and conditions, including cancer, diabetes, Alzheimer’s …

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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 and dragon fruit line the shelves at my local grocer. Berries are incredibly versatile, landing in everything in my kitchen from galettes and pancakes to focaccia and of course, smoothies. But not every smoothie is meant to be consumed in a glass. Cue the smoothie bowl… My berry bliss smoothie bowl is one of my top breakfast choices. Raspberries and pineapple deliver vitamin C and potassium, while almond milk, flax and collagen powder add necessary fiber and protein. Plus, the addition of coconut oil supplies the body with healthy fats in the form of medium-chain triglycerides (which are a terrific fuel and energy source). I topped this smoothie bowl off with fresh dragon fruit and blueberries, but feel free to add toppings such as: sliced almonds, hemp seeds, sunflower seeds, coconut flakes, yogurt or even edible flowers. No matter what combination you come up with, …

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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 half of them reporting it’s “moderate” or “severe.” Here are a few ways members are coping with it… Even more tips “I’ve found it most effective to switch to a moisturizer and makeup with added sun protection. I also keep a floppy hat hanging by the front door for yard work.” – LilliGirl “I have invested in several neutral, long sleeve jackets. They help by covering my arms but are athletic/highly breathable and actually keep me cooler than allowing the sun to beat down on my skin ever would.” – LilliGirl “I find I can slowly build up a bit of ‘tolerance’ by sitting out in my garden. I start by doing 5-10 minutes for a few weeks and slowly build it to 30-40 minutes eventually.” – FABWHEELIE Reminder: Not all sunscreens are created equal. Dermatologists recommend using sunscreens that contain the ingredient Mexoryl (which …

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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 a truck, driven by a drunken driver. During her rehabilitation, she suffered a small stroke and was also diagnosed with lupus (which can be triggered by trauma, like accidents and injuries). Marisa launched her LupusChick blog in 2008, and it’s now a popular destination for reflections on life with chronic illness, recipes (she’s a juicer and a foodie!), wellness tips and more. She’s been featured in U.S. News & World Report, The Huffington Post, The Mighty, Eating Well, Elle, Glamour, and many other publications as a voice for people with chronic illness. She raised even more awareness of lupus when she reigned as Mrs. New York USA Universal 2015. We recently caught up with her about her experiences with lupus, her award-winning blog and her hopes for this new partnership with PatientsLikeMe. What inspired you to launch LupusChick? Did you expect it would reach so …

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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 sources (spoiler alert: routines and planning ahead can help): A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed. Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day. “I try to stay in bed as much …

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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 can do means you are standing still.” Get to know Hetlena and read on to find out how she stays positive: “After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability. What gives you the greatest joy and puts a smile on your face? What doesn’t give me the greatest joy? Not much. I do my best to find joy and appreciation in everything that I am exposed to because waking up to a new day is one of the greatest joys anyone can experience. I’ve always been a morning person, so the smile comes naturally. After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability. (…And yes, I could do …

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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 an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.” More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington. John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and …

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