Patient Experiences

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 advocates in their condition communities), we’ve put together a new guide called “Advocacy 101.” See/expand and print the guide here! More than 30,000 PatientsLikeMe members indicate that advocacy is one of their interests on their profile. Join PatientsLikeMe or log in now to find and connect with these members here (filter the list to show others with your same condition using the “Condition” search field in the left-side menu). Have any advocacy pointers you’d like to add? Add a comment below or log in to share with the community here!

Lupus Diagnosis - Lupus Self Test - Hetlana

Lupus Diagnosis and Lupus Self Test: Member Hetlena’s pointers for her old (newbie with SLE) self”

What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years… “This isn’t the end. There are other things that can give your life meaning.” —Christine Palmer, Dr. Strange (2016 film) In the 2016 movie Dr. Strange, a main character, Christine Palmer, captures how it feels to be confused, frustrated and hopeless – feelings I’m very familiar with because of SLE. The diagnosis of lupus can be mixed with pain, nausea, fever, swelling and all too many other symptoms and ailments combined. From the very beginning, it became more than I could bear – or at least so I thought. I felt targeted all the time. When I reflect on my feelings right after my diagnosis, I remember most of all that I didn’t feel confident. If I knew then what I know now, I would… Question everything There was so much about lupus that I didn’t know about (and years later, there still is). Naturally, a diagnosis or the confirmation of one can come as a …

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5 must-watch TED talks mental health

5 must-watch TED Talks Mental Health

Ever watch TED Talks? TED is a nonprofit “devoted to spreading ideas, usually in the form of short, powerful talks (18 minutes or less).” We’ve rounded up some of the top health-related videos from the TED series (1,700+ talks and counting) that might resonate or give you food for thought. Phil Hansen – “Embrace the shake” Hansen developed a hand tremor in art school and thought he might need to abandon his passion. His neurologist, however, encouraged him to “embrace the shake.” While he could no longer make the art the same way (pointillist drawings), he found some new media for making art (like… hamburger grease paintings) and learned that “embracing a limitation could actually drive creativity.” Notable quote: “Instead of telling each other to seize the day, maybe we can remind ourselves every day to seize the limitation.” Amy Mullins – “The opportunity of adversity” The definition of “disabled” disturbs Mullins, who’s a double-amputee because she was born without shinbones. Every person will face adversity, and society’s preconceived notions about “disabilities” or differences or ailments aren’t doing us any favors, she argues. What if they are a source of strength? Notable quote: “Perhaps until we’re tested, we don’t know what we’re made of. …

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doctor holds vote pin

Healthcare = hot election topic. Check out some Election Day basics

Ready to cast your ballot? Election Day is almost here and recent polls show that healthcare is one of the top issues on voters’ minds. Here’s some quick election-related info for you. Election Day and voting basics – Tomorrow (November 6, 2018) is a general election for most states, except Louisiana (where November 6 is a primary and December 8 is a runoff general election). You can search for your polling place here. Learn more about voting in general, as well as voter accessibility laws for seniors and people with disabilities, and absentee voting info for military families and overseas U.S. citizens. Seats up for grabs – Candidates are vying for all 435 seats in the U.S. House of Representatives, 35 (of 100 total) U.S. Senate seats, 39 governor spots, and a number of state and local public offices. See who’s running for Congress in your state, and look into their stance on healthcare and other issues that matter to you. Pre-existing conditions=top issue – A spring 2018 poll by the Kaiser Family Foundation (KFF) found that healthcare was a top issue for 22 percent of registered voters. More recently, a September poll found that healthcare is a top issue for 27 percent of voters. “KFF polling continues to find pre-existing conditions as a widespread concern and with the impending lawsuit …

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“In Claire fashion”: Claire Wineland + organ donation with a health condition

Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition. (Photo: Claire’s Place Foundation) Claire’s life and mission Claire was born with cystic fibrosis (CF), a rare genetic condition that causes a buildup of thick mucus in the lungs, pancreas, and other organs. After surviving a 16-day coma at age 13, she started a nonprofit called the Claire’s Place Foundation to help provide emotional and financial support for others with CF and their families. In high school, Claire began sharing about her life and her condition in YouTube videos, on social media and through speaking engagements (including TEDx). She won several awards for her role as an activist, including a Teen Choice Award, the Gloria Barron Prize for Young Heroes, and Glamour Magazine’s College Woman of the Year. “She’s on a mission to normalize sickness, push back at those who pity her and have a meaningful life for however long it lasts,” CNN said in a 2017 profile of Claire. “The …

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Pain Scale 1 to 10 falls short

The Pain Scale 1 to 10 falls short

As Pain Awareness Month (September) comes to a close, we’re exploring how pain is subjective, and expressing it using the classic 1-to-10 or “smiley face” scale can be tricky. What are the shortcomings of these scales? And what can help you communicate better with your doctor? Pain scale problems NPR recently reported about the trouble with the most common pain scales: Numbered scales – A zero-to-10 or 1-to-10 scale may leave patients scratching their head – what if I’m a “4″ right now but was a “7″ when I first called the doctor? Is my “5″ the same as someone else’s and could it lead to over- or under-treatment? (Note: Clinicians only consider scores over 7 to be severe; 4 to 7=moderate; and 1 to 3=mild.) Face scales – The well-known Wong-Baker FACES pain rating scale was originally created for children, but it’s still widely used for all ages. Not everyone can equate their pain level to certain emotions or facial expressions. For example, some people with autism or chronic severe pain may not understand which face to choose – if I’m not crying, is my pain not severe? Adam Rosette, a 33-year-old who had surgery to remove multiple benign brain tumors, tells NPR he wonders if …

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What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more

“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house clinical healthcare professionals) to help us learn more. What is lupus nephritis? Lupus nephritis is an inflammation of the kidneys caused by an autoimmune response. Lupus can cause an autoimmune attack on various parts or tissues in your body, including the kidneys. During this attack, the immune system turns on itself and tries to fight off “foreign invaders” — which are actually your body’s own healthy cells. This can trigger inflammation and swelling of the tissue in an attempt to eliminate foreign bodies. Lupus nephritis can impair the kidneys so they’re not able to properly remove waste or control fluids in your body. Left untreated, nephritis can lead to more serious kidney disease. Cases may range from mild to severe, depending on the signs and symptoms and what areas of the kidney are involved. Here are some symptoms of lupus nephritis: Unexplained swelling in your feet, …

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Fundraising for a health-related charity walk/run? Get sponsored by PatientsLikeMe!

Looking for ideas for raising more money for an upcoming cancer walk, MS bike ride, or other health-related charity event where you’ll be hitting the streets? Learn more about PatientsLikeMeInMotion! It’s a program that sponsors you and your team as you walk, run, cycle (etc.) with a nonprofit organization to raise funds and awareness for your disease or health condition (psst—PatientsLikeMe gear included). Read on! PatientsLikeMeInMotion has grown a lot since we launched it back in 2009! Members have raised funds for cancer, multiple sclerosis, ALS, epilepsy, kidney disease, psoriasis, mental health and more (just take a peek at our Pinterest board). In 2017, 89 members and their teams (with a total of nearly 2,000 participants) raised awareness and over $14,000 for their diseases. In the first half of 2018, 73 members from 24 states and their teams have already participated and raised more than $18,000. Interested in sponsorship by PatientsLikeMe? Here’s how to apply: Join PatientsLikeMe (membership is free)! Make sure your profile is up-to-date. Submit a request with your team and event details, including your preference of spiffy T-shirts or PatientsLikeMe hats (like the one above). We’ll confirm the details and you’ll be on your way. (See the full guidelines here to learn more.) Past participants, inspire others. If you’ve been a part of PatientsLikeMeInMotion, feel free …

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Why is dietary advice so all over the place? Nutrition experts explain

If you’re confused about what kind of milk to drink, what type of cooking oil is “healthiest” or whether the Mediterranean diet is the ticket to heart health, you’re not alone. Nutrition experts dig into the complexity of dietary research. Digesting dietary advice The constant churn of nutrition news, books and blog posts — combined with the growing number of food options at the grocery store — can feel contradictory and make your head spin when it comes to making healthy diet decisions. “As a dietitian, even I get tripped up when new studies that come out that question my beliefs,” Washington Post writer Cara Rosenbloom admits in a recent article on “how to handle ever-changing nutrition science.” She interviewed Dariush Mozzafarian, the cardiologist and researcher behind this 2018 BMJ analysis of nutrition science. They make the case that we have an issue with how we “digest” food advice: We take it very personally. “If you learn in physics that there was new research about a black hole, you may say, ‘Oh, that’s interesting,’ but you don’t change your habits because the science has changed,” Mozaffarian says. But people these days tend to swiftly avoid or adopt foods (such as wheat/gluten or coconut oil) based on …

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Advance directives: What are they and why should you have one?

If you find talking about end-of-life care and advance directives isn’t easy, you’re not alone. One 2013 survey by The Conversation Project found that while 90% of respondents said talking about it with loved ones is important, only 27% actually started the conversation. And according to another recent study, as few as 38% of patients living with a chronic condition in the U.S. have an advance directive. But planning ahead about the decisions you want your care team to make if you’re unable to communicate — and putting it in writing — can bring peace of mind and reduce confusion for loved ones later on. Let’s take a closer look at what advance directives are all about and how to start the process. What’s an advance directive? According to the ALS Association, “an advance directive is a legal document used to instruct others about your health care wishes. It acts as a guide for your loved ones and health care providers to make health care and treatment-related decisions on your behalf, should you become unable to convey them due to illness or incapacity.” Types of advance directives There are a few different types of advance directives that vary by state. The two most common are the living will …

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