Awareness

World Mental Health Day 2015: What does dignity mean to YOU?

Mental illness affects people in every corner of our global community. Thousands with mental health conditions around the world can face discrimination, stigma, and emotional and physical abuse in mental health facilities. Additionally, many receive poor quality of care due to dilapidated facilities and lack of qualified health professionals.[1] The theme for this year’s World Mental Health Day, observed annually on October 10th, and sponsored by the World Federation for Mental Health (WFMH), is “Dignity in mental health” and focuses on how dignity can be provided in all aspects of mental health – from patient care to the attitudes of the general public. The WFMH’s goal when it established World Mental Health Day in 1992 was public education at all levels of society. Today it’s become the largest and most widely promoted education and advocacy program of the WFMH. How can you take part?  You can read and share their campaign materials. And on social media, they’ve been asking: What does dignity mean to YOU? #WMHDay. You can share your responses on their Facebook and Twitter. And don’t forget to log in to your PatientsLikeMe community to share there as well. Defining dignity, together. [1] http://www.who.int/mental_health/world-mental-health-day/2015/en/ Share this post on …

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The highs and lows of bipolar disorder

Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long.  Did you know bipolar disorder is a worldwide condition? In Australia there are around 238,957 people with bipolar disorder. In the UK: 723,248 people. Germany: 989,095 Canada: 390,094 Iran: 810,038 India and China, each have 12 – 15 million people who are bipolar By the numbers… 5.7 million: number of adult Americans affected by bipolar disorder (or 2.6% of population) today 25: average age for beginning of bipolar disorder 50/50: men and women get bipolar equally 3X: But women are 3 times more likely to experience rapid cycling with B.D. 6: Bipolar disorder is 6th leading cause of disability in the world. For more facts about bipolar disorder, visit the full infographic. And don’t forget to share your experiences with bipolar disorder with the PatientsLikeMe bipolar community. Share this post on Twitter and help spread the word.

#HelpingWomenNow: October is breast cancer awareness month

October is Breast Cancer Awareness Month, which you’ve probably noticed by the annual surge of pink ribbons – but what does it really mean? The yearly campaign to increase awareness of the disease, hosted by the National Breast Cancer Foundation (NBCF), is about encouraging women to have a plan for early detection with its theme of #HelpingWomenNow. Since 1 in 8 women will be diagnosed with breast cancer during their lifetime and it is the most common cancer among women worldwide, continued awareness and education efforts are vital in promoting the importance of early detection. This month you can explore one of the several ways to get educated or get involved: Early Detection Plan Create an Early Detection Plan and invite others to do the same through their online site or using the mobile app. Beyond the Shock Share Beyond The Shock, the NBCF’s breast cancer educational resource, with friends and family. This free and comprehensive online guide to understanding breast cancer is a resource for women who have been diagnosed with breast cancer, a place for loved ones to gain a better understanding of the disease, and a tool for doctors to share information. Here you can learn through …

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Cancer awareness in September: Prostate, ovarian and thyroid

September was an awareness month for three types of cancer – prostate, ovarian and thyroid – and the emphasis fell on early detection, something to keep in mind year round. Man up. Get checked.  #manupgetchecked This month, the Prostate Cancer Foundation (PCF) teamed up with boxing legend Evander Holyfield for a PSA. The PCF also provides helpful guides including questions to discuss with your doctor. WhyTeal? #TakeActionNotChances The National Ovarian Coalition sponsors the WhyTeal awareness month for ovarian cancer. For them, raising awareness and promoting education about this disease is crucial in helping women to earlier diagnoses and supporting survivors – making a difference demands taking action. Get a Neck Check! With tips, awareness tools and graphics, and video and audio PSAs, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year. And don’t forget to stay on top of your own condition – by continuing to add your data and experiences on the PatientsLikeMe site. Every piece of information can help change medicine for the better! Let’s stay aware, together. Share this post on Twitter and help spread the word.

Tackling brain illness, together

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement: Our brains need answers. And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say: If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions. Don’t forget to share this post on Twitter and help spread the word for #BrainsNeedAnswers.

Food for thought: August (diet) edition

Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below: “I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.” -Fibromyalgia member on her “detox” diet “My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.” -Diabetes II member on …

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Getting ready for psoriasis awareness

Image courtesy of the National Psoriasis Foundation Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe. What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms. The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you. During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with Maria, David and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe. Share this post on …

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Hartfell shares about her PatientsLikeMeInMotion™ experience

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say: “My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which …

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Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more

In the beginning of June, we posted about National Headache and Migraine Awareness Month, and today, we’re continuing the conversation with Chris Hannah, the founder of Cluster Headache Support Group (CHSG). He recently sat down for a PatientsLikeMe blog interview, and he spoke at length about everything related to cluster headaches. Below, read what he had to say about PatientsLikeMe, new drug treatments for cluster headaches and his own personal experience with “the worst pain he has ever felt.” What do you feel is the most important information people should know about cluster headaches vs. other types of headaches? First and foremost, if you are a cluster headache sufferer, it is important to know that you are not alone. It may seem that way since so many have never even heard of it and often mistake it as just another name for a regular headache. It is actually one of the most painful conditions known to medical science (you can Google that). It’s also not a form of migraine, it is a primary headache disorder but is quite different from migraine in many ways, especially given its odd periodicity where sufferers will have attacks at the same time of day, …

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Let’s talk about men’s health

On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1. Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys. There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas: Join the Men’s Health Forum discussions Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today. Wear something blue The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media. Research the facts Learn about Key Health Indicators, common men’s health conditions and leading causes of death …

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