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Lupus survivor testimonial

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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People listening to music

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 appealing to people living with depression, anxiety, PTSD or even chronic pain. “I find ASMR videos to always be extremely calming,” says one PatientsLikeMe member. “It’s basically the ‘tingles’ or a very chill feeling you get when you watch certain repeated motions or hear soft-spoken or whispered words… Give it a try, especially in moments of panic, anxiety, or agitation.” Other PatientsLikeMe members have also talked about ASMR in the forums and in their treatment evaluations (join PatientsLikeMe or log in to see what they say). With meditation, podcasts and soothing music as tested tools to inspire calm, it’s no secret that sound can bring on relaxation. But what exactly is ASMR and how can it help people living with chronic conditions? The Soothing Art of ASMR ASMR is a nonclinical term coined in 2010, and the trend has its origins online. Before it had …

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Man listening to podcast, relaxing

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 our Community “I’ve found quite a few podcasts that give guidance for meditation,” one member says in the forum. “My favorite is ‘Zencast’ — it is a series, that has [nearly] 500 episodes. There are quite a few others. You can find them from most any podcast player library. Use meditation, or mindfulness, as search words. You may find them helpful!” Other members have also chimed in with their favorite relaxing podcasts (join PatientsLikeMe or log in to see what they say!). Whether you’re into meditation, music, history or mysteries, there’s seemingly a podcast for everyone. While we haven’t had a chance to listen to all these (so we can’t vouch for all the content or possible advertising), we’ve rounded up some relaxing podcasts that have gotten media attention and noted some trends we spotted. (Please don’t listen to sleep-inducing podcasts while driving! Also, beware of possible topics or content that may …

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woman holding coffee mug

“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 notice symptoms of Raynaud’s while she lived there (especially in air-conditioned spaces), but her symptoms got much worse when she moved to chilly Canada. Doctors officially diagnosed Julia with Raynaud’s disease three years ago. She’s also living with rheumatoid arthritis, asthma and other conditions. Raynaud’s is a vascular (blood vessel) disorder that causes ischemic attacks (lack of blood flow), usually in the hands and fingers, feet and toes, ears and nose. This makes them feel cold, numb and/or painful and turns them white or pale. “Winter is when it becomes really hard to cope with,” Julia says, but she noted that it’s an issue year-round because of air conditioning. “When you have an attack, it isn’t only your fingers, your entire body feels cold,” she says. “Even with a lot of layers, it’s not enough. When you’re at home, you can find a lot of …

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Keto diet trend

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), some of the hottest topics people are searching for related to “diets” include: Ketogenic diet Carnivore diet Intermittent fasting What Is The “Keto” Diet? The ketogenic or “keto” diet is a very low-carb, high-fat diet that’s been around for decades and gained popularity thanks to books, blogs, and celebrities/influencers touting it the past two years. Researchers developed the ketogenic diet in the 1920s as a treatment for epilepsy, and some people with epilepsy that doesn’t respond to medication still use the diet to help prevent seizures today. Most people following the keto diet these days are using it for weight loss. By severely cutting carbs, the body enters ketosis — a metabolic state that burns fat for energy, essentially like starvation mode. The jury is still out on whether ketosis and the keto diet are safe, especially in the long term, because research is lacking. And when it comes …

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patients doing art therapy

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 permission, we’ve highlighted a sampling of our members’ artwork — from drawings, paintings and photographs to jewelry, fabric and graphic arts — in a new Facebook album. In total, the 2017 art show and 2018-19 art show drew (no pun intended!) 300+ forum posts and 2,000+ “likes” — data that shows we’re a vibrant and supportive social network for patients. (Psst — join PatientsLikeMe or log in to see all the wonderful entries in these art shows and connect with thousands of others living with 2,700+ health conditions.) “PatientsLikeMe is a large community but events like this highlight just how connected and comfortable members feel to share their talents with each other,” says Vivien Roman-Hampton, our mental health community moderator and a licensed social worker. “These examples of such amazing art are a reminder that our members are more than their health challenges — they are complex, unique, creative individuals. I’m thrilled to be able …

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people with health conditions, PatientsLikeMe members, 2019 Team of Advisors

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 partners. “It’s nice to connect with people who go through the same things that you do every day,” says on Team of Advisors member Marybeth, who’s living with multiple sclerosis and other chronic conditions. Click here to watch a 2-minute video about this group! Say hello to the team! Pictured above left to right: (Back row/standing) Marybeth (Blujnbby), living with multiple sclerosis, rheumatoid arthritis, myasthenia gravis Steven (Stunninsteve), living with multiple sclerosis Joseph (Jpo_runs), living with Parkinson’s disease Ashley (Ashley876), living with major depressive disorder and PTSD (Middle row/seated) Juana (Juanymata), living with lupus, rheumatoid arthritis, Sjogren’s syndrome Wes (Jwsexton7), living with ALS Eva (Treat2c), living with fibromyalgia, migraine, lupus, rheumatoid arthritis, Sjogren’s syndrome (Front row/seated) Sande (Sandman123), living with rheumatoid arthritis Brandy (Bstarks), living with fibromyalgia This year marks the 5th anniversary of our Team of Advisors program! As in past years, this group …

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Vitamin supplements and apple

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 your doctor before taking them because they may come with risks — read on to learn more. Healthy intentions The BBC recently highlighted the potential risks in a piece called “The food supplement that ruined my liver.” As Texas resident Jim McCants recalls, he was hitting age 50 and hoping to prevent the heart problems that his father died from, so he sought to make some lifestyle changes. These included taking a green tea supplement, which wound up damaging the Texas resident’s liver so badly that he needed a transplant. Years later, McCants still struggles with kidney disease and abdominal pain — all because of a product he thought would make him healthier. McCants isn’t alone. More than 50% of U.S. adults take a dietary supplement, often in the form of multivitamins, calcium, folic acid or vitamin D. And supplements are nothing new. The Chinese have been …

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Lupus and period problems, explained

Are you living with lupus (SLE) and experiencing problems with your monthly period? (Like, not getting it. Or having a really heavy, long period.) And have you ever wondered how lupus might play a role in this? Read on. What does the research show? Small studies have found that people with SLE are at greater risk of menstrual irregularities compared to the general/healthy population. The greatest type of irregularity appears to be sustained amenorrhoea (long-term absence of a period). Some people with SLE experience premature menopause. These factors may increase the risk of period irregularities: Being age 30+ Being on cyclophosphamide therapy (a chemotherapy drug) Taking immunosupressants (see a list of immunosupressive medications used to treat lupus) Young people (17 and under) with juvenile SLE also experience period irregularity and hormone abnormalities, research has shown. If you’re not getting your period (at any age), tell your doctor and ask how your lupus, treatments and other factors (such as menopause or any other health conditions you may have, like polycystic ovary syndrome) could be affecting “Aunt Flo.” If you are getting a heavy or prolonged period, it’s also important to talk with your doctor and get checked for anemia, which is already a common problem in people with lupus. Some women find …

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Can dogs detect disease? Studies say…

Can “Spot” spot cancer, diabetes, Parkinson’s disease and more? We’ve rounded up some of what the initial research shows so far — and it’s not just fluff. “The full potential of dogs to detect human disease is just beginning to be understood,” says Claire Guest, chief executive of a U.K.-based organization called Medical Detection Dogs, which trains “biodetection dogs” (involved in some of the research cited below). “If all diseases have an odor, which we have reason to believe they do, we can use dogs to identify them.” Sniffing out the latest studies Several media outlets reported this fall that scientists are currently training dogs to sniff out the scent of malaria, which is on the rise and especially deadly in children. In October, researchers announced at the American Society of Tropical Medicine and Hygiene conference that two dogs correctly detected malaria in children (who appeared healthy, without symptoms) 70 percent of the time. Following this small “proof of concept” study funded by the Bill & Melinda Gates Foundation, researchers will continue to work on training biodetection dogs and also try to develop a device that could one day mimic what the dog’s nose does — pick up scents or compounds associated with …

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