Lupus

Zoodles! Let’s dish on lupus/food + swap recipes

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If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse? Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite recipes (psst—one involves zoodles!). Food Q&A with Jeanette Jeanette says she turned to dietary changes when she stopped taking Plaquenil due to severe side effects, including retina damage. “I had nothing to lose — I signed up for Tony Robbins’ Unleash the Power Within [a self-help program] that made me look at myself and my relationship with food differently,” she says. “I started logging my food intake for a few weeks on and off, I noticed how some of my favorite foods were causing me some issues ranging from stomach pains to full inflammation. That’s when I started paying close attention to what my body was telling me and I needed to do something about it.” Here’s what else she shared with us in a recent Q&A. Everyone is different, so these foods and dietary changes may not affect you and your lupus the same …

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Health news: What’s making headlines in June

Bipolar disorder, Cancer, Conditions, Depression, Lupus, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, PTSD / By

In case you missed it, check out this round up of some of the stories making headlines in June…   Parkinson’s disease: Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in. Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study. Lupus: How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A. Lung cancer: Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for …

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Age-by-age guide to navigating reproductive health with lupus

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Lupus can affect your reproductive health in a variety of ways throughout your life and can raise the risks of complications during pregnancy. Thanks to medical advances, the chances of having a safe pregnancy have improved — the key is careful planning. Check out this timeline of gynecological and reproductive health considerations when you have lupus, plus pointers if you’re considering getting pregnant. Teens Puberty and childhood treatments – The stress that lupus causes to your body can delay puberty (join PatientsLikeMe and log in to see our recent forum discussion on lupus and period problems). If you had lupus earlier on in life, you may want to ask your doctor about how different treatments you’ve had could affect your reproductive possibilities. Teens and young women should also talk with their doctor about contraception for those with lupus (more on that below), especially because some lupus treatments can harm a fetus. HPV vaccine and cervical cancer prevention – The Centers for Disease Control and Prevention (CDC) recommends that all girls get the human papillomavirus (HPV) vaccine when they are 11 or 12 years old to protect them against cervical cancer. The vaccine is considered safe for people with a suppressed immune system, according to Lupus.org. But it’s …

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Member Christine’s Instagram takeover for World Lupus Day

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In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!) Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way. Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure. “You make a living by what you get. You make a life by what you give.” —Winston Churchill Finding the right …

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Health news: What’s making headlines this month

ALS, Bipolar disorder, Cancer, Conditions, Depression, Lupus, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences / By

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May. ALS May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS. Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info. Lupus May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness. A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out. Parkinson’s Disease “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which …

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Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

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In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!) “I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two was diagnosed with lupus in 2005. She’s on the 2018 Team of Advisors (catch a quick video about her here) and is a passionate advocate for the Lupus Foundation of America. Lupus Advocacy Summit recap Jeanette recently attended the Lupus Foundation of America’s 2018 National Advocacy Summit in Washington, D.C. for the second year in a row. What happened at the summit? Take a peek at the agenda and read on! “We met many young Lupus Warriors from around the country and they told us their stories and their fight with this disease,” Jeanette says. On Day 1 of the two-day summit, Jeanette and other advocates heard from lupus researchers and drug developers about clinical trials for lupus treatments, particularly for childhood lupus and lupus nephritis (PatientsLikeMe has a Clinical Trial Finder where you can search by condition, location and more). Attendees also learned advocacy tips they can use year-round, practiced telling their personal stories …

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Lupus and vitamin D deficiency – get the lowdown

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Vitamin D is nicknamed “the sunshine vitamin” because catching some rays on bare skin triggers your body to produce it naturally. But what if lupus-related sun sensitivity (not to mention the winter weather) restricts your sun exposure? Take a peek at some key info on vitamin D deficiency, plus learn some dietary sources of this important nutrient. What are the effects of limited sunlight? Vitamin D deficiency is a common health issue in general, and reduced exposure to sunlight is one of the main factors. Researchers estimate that almost 50% of the world’s population – across all ethnicities and age groups – have a vitamin D deficiency. When the sun’s rays hit bare skin, it signals the body to produce its own vitamin D. Getting vitamin D via sunshine can be especially tricky for some people with lupus who are taking steps to limit sun exposure or protect the skin with sunscreen and clothing. Ultraviolet (UV) light from the sun or artificial light sources can make lupus worse in 40 to 70% of people with the condition, according to Lupus.org. Sunlight may exacerbate skin disease or skin-related symptoms in people with lupus, such as the “butterfly” rash, discoid lesions and photosensitivity. Not everyone …

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Why these 5 Olympians with health conditions are #1 in our hearts

Brain Injury, Conditions, Diabetes, Lupus, Patient Experiences, Rare Diseases / By

The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden. U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes of vomiting and severe weight loss and has been hard to diagnose. She had three abdominal surgeries and has shown her scars on Instagram. After a long and painful recovery, Alexa was able to return to skating. “My whole outlook changed,” she told Team USA. “I was grateful to have the chance to fall instead of stressing out over falling or not. Was a fall as big of a deal as a drain getting pulled out of me? No, not at all. I was grateful.” In PyeongChang, Alexa and her husband/skating partner, Chris Knierim, took home the bronze medal in the figure skating team competition and placed 15th in the pairs competition. Alexa shared this photo with SELF for a video about her health problems and extraordinary road to the Olympics. American long-track speed skater Brittany Bowe sustained a concussion when she collided with another skater in 2016. Later, after fainting multiple …

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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

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Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus. A mix of symptoms Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects. “I was really flaring…” PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just …

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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”

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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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