Conditions

Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.

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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 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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Family activities with a health condition

Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday break! (Check out more of Jeanette’s story and perspective on parenting with lupus.) What are some activities you did with your kids when you were fatigued or weren’t feeling well? When the kids were growing up and I just was exhausted to the point where I could only make it to the couch, we would play board games, video games or card games. Sometimes, I would make them read to me or I’d read to them. If I was really hurting, I would have them cook for me, and I would watch them add the ingredients. It taught them how to cook, while helping me out without them even realizing. Easy, relaxing things that wouldn’t aggravate any symptoms was the way to go for me. (See some of Jeanette’s favorite recipes that work well with her lupus.) And what kinds of activities did you and your family …

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Gift guide: Gadgets for people with health conditions

Who needs another scarf or coffee mug? With the holiday shopping season upon us, PatientsLikeMe members are crowd-sourcing a list of handy products and tools that can actually help people living with pain, fatigue and other symptoms of chronic illness or aspects of aging. Check out the list below, for starters, and then join PatientsLikeMe or log in to chime in with your own ideas here in our general forum (share your favorite gift ideas with your loved ones who truly want to know what’s on your wish list and what could be helpful for you!). What’s behind this gadget guide/wish list? We were inspired to start this “wish list” because many PatientsLikeMe members have shared in the condition forums which gadgets and products have helped them function a bit better day to day. For example, here’s a peek at items people with Parkinson’s disease and ALS have hailed as helpful in their community forums (join PatientsLikeMe or log in for access to all links): A “rocker knife,” also known as an “ulu” or a “mezzaluna” knife “works great for chopping/slicing veggies, fruits, cheeses, etc.” and a “large-blade pizza cutter is great for cutting pancakes/waffles very quickly,” one member says With a food chopper, like those sold by The Pampered Chef, “I can chop onions, …

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Prevention of Parkinson's Disease - Parkinson's Freezing

Parkinson’s Freezing Triggers and Fall Prevention

Gait freezing and falls are common among people with Parkinson’s disease (PD). Take a closer look at patients’ experiences, common triggers of freezing and tips that may help prevent falls. What is known about freezing and falls? Researchers and movement experts have been studying gait freezing in people with PD for several decades. The exact cause of freezing is unknown, but experts believe it’s caused by PD’s effects on parts of the brain that control motor movement, such as the basal ganglia or part of the right side of the brain. Common triggers of gait freezing may include: Crowded environments or tight spaces Turning corners, going around furniture or objects, or changing direction Entering doorways, crossing over thresholds (especially from outdoors to inside), or changes in flooring (for example, from tile or wood to carpet) Distraction or multi-tasking, such as walking and talking or carrying objects Anxiety (initial research shows that this common symptom in people with PD may play a role in freezing, but further studies are needed) Some tips and tricks may help “thaw” episodes of freezing (but every person is different, so talk with a movement specialist or physical therapist about what might work for you): Visual cues — Giving yourself a visual hint …

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Men's Mental Health - PatientsLikeMe member John films WebMD depression video

Brits are boosting men’s mental health — can the U.S. follow suit?

The British Royals’ passion for improving mental health is giving us all the feels — and possibly helping reduce male suicide rates in the U.K. Who’s raising awareness of men’s mental health in the U.S.? (See how PatientsLikeMe member John, pictured above, is doing his part!) Diverging stats in the U.K. and U.S. The U.K. has been making progress in terms of reducing male suicide rates and the stigma around men’s mental health, thanks in part to Heads Together campaign launched by Prince William, Kate Middleton and Prince Harry in 2016. Each of them have their own areas of focus in mental health advocacy. Kate deserves credit for coming up with the idea to join forces for one major campaign, Prince William says. He and his brother have also been opening up about their grief from losing their mother during their childhood. Unfortunately, U.S. suicide rates (among men and women) have been on the rise, according to the latest CDC report, and stigma still surrounds mental health — especially among men. The American Psychological Association (APA) says that about 6 million American men suffer from depression every year, but men are far less likely than women to seek help for their mental health. U.S. psychology researchers are studying “how …

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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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cancer patients chair yoga

Ommm: People with cancer practice chair yoga for bone benefits

Chemotherapy and other cancer treatments can take a toll on your bones and overall strength, so some patients are turning to chair yoga to boost their bone health and balance. Things like bone health ‘seemed trivial compared to cancer’ We heard about chair yoga in this New York Times article, “Chair yoga for my funny bones.” The author, Susan Gubar, began practicing chair yoga after she recovered from a fractured pelvis following years of ovarian cancer treatment. “I had no idea that cancer treatments put patients at risk for osteoporosis,” says Gubar, whose treatment included chemotherapy, radiation and steroids. A new diagnosis of osteoporosis and a vitamin D deficiency “made me realize how often I ignore health issues because they seem trivial compared to the mortal threat of cancer. Stress tests, dental work, cholesterol checks: who cares? Just dealing with cancer had been enough for me. Clearly that had to change.” Gubar says she used to love walking but says she gave it up because she now walks stooped-over with a walker and has neuropathy in her feet (also from chemo). Her physical therapist and a friend from her cancer support group urged her to try chair yoga – now she’s hooked. Small studies have …

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