Summer food on a table

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 prep, you can easily enjoy yourself and the foods that make you feel your best. Here are some tips for navigating mealtime at your next festive affair! Plan Ahead and Bring Something Safe When you are invited, ask the host what is on the menu and what you can bring. This way, you can make a game plan about which foods you’ll indulge in. It also gives you the opportunity to bring something you know is safe for you and your condition. If you are looking for some recipe inspiration, PatientsLikeMe members recently shared their favorite snacks and meals that fit within their dietary restrictions. Read through some tried-and-true recipe ideas for eating with Type 2 Diabetes, Multiple Sclerosis, Fibromyalgia, and more! Stay Hydrated and Look for Extra Electrolytes When Necessary It is easy to be so focused on your dietary restrictions you forget about …

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Woman Holding Up Her Hand

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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Woman Holding Crying Woman

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 tell people in your circle about your condition so you can start building a network of support. Having people by your side throughout the journey can be both comforting and empowering. We reached out to our members to ask them to offer some tips on how they shared their difficult news. Read through some common responses: Tell Those Closest to You Face-To-Face There is undoubtedly power in the human touch, and having the physical support of your loved ones can give you strength and a deeper connection. A hug or a handhold is often worth more than any words of condolence. Delivering the news in person allows for a back-and-forth dialogue about your diagnosis and treatment options. Questions can be answered in real-time and with honesty. It is helpful to read your loved one’s non-verbal cues and provide a space for them to express their …

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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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ASMR

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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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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cold hands holding 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 + 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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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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