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Team of Advisors member Laura takes over the PatientsLikeMe Instagram for World Mental Health Day

In honor of World Mental Health Day, we asked PatientsLikeMe member Laura (thisdiva99) to take over our Instagram feed for the day. Laura is a professional opera singer, Massachusetts native, a member of the PatientslikeMe Team of Advisors, and is living with bipolar disorder. She gave us a glimpse into a day in her life, Check out the images and captions below to see what she shared. Hello my Instagram compatriots! Laura here. Some people start the day with hearty oatmeals, or eggs fortified with kale. I start my day with a champion #bipolar breakfast of vitamin supplements and mood stabilizers… then I can eat my own breakfast 30 minutes after. For me, supplements are super important to incorporate with my meds. Talk to your doc about it to see if they could work for you!   AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA With my trusty steed Corolla, I conquer the day’s doctor’s appointments. On a good day, I can keep my ride in the driveway; on other days I travel to multiple towns/cities to see psychiatrists, therapists, endocrinologists, and the like. I also incorporate a yoga class or visit to the gym as I can. For me, treating the body as a whole is the key …

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“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us. How are you feeling these days?  I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease. How long had you been a candidate for a lung transplant?  I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also …

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Meet Laura from the PatientsLikeMe Team of Advisors

  Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.” Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions. What gives you the greatest joy and puts a smile on your face? Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of …

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Patients as Partners: Member Laura on launching a PF support group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community of people who know what you’re going through. Check out the Q&A below to see how she helps patients, caregivers, and their families understand that they’re not alone. Tell us a little about the New Britain PF Support Group — who’s involved and what’s the goal? The New Britain PF Support Group had the first meeting September 2015. The meeting is for the patient and caregiver, plus family and friends who may be interested in understanding what their loved one is going through. The goal is to provide information on PF/IPF. Knowledge can empower the patient and caregiver to work with their doctors and professional team. Most importantly, the support group lets people know they are not alone — we are all in this together and we understand. How did you come up with the idea of creating the group? There was only one support …

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Meet Laura from the PatientsLikeMe Team of Advisors

  We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus. Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.” Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through. What gives you the greatest joy and puts a smile on your face? My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing. How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? …

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to be a panelist and share their real-world experiences with the disease – and Laura (LaurCT) was selected to attend! So, along with Sally, Laura headed to Silver Springs, Maryland and spoke to the FDA about what life if really like living with IPF. Check out how it all went below. Laura was officially diagnosed with idiopathic pulmonary fibrosis (IPF) in May 2013, but was living with symptoms for years before that. She’s really an inspirational member of the community and always has her 3-stars (which means Laura is a super health data donor!). Why did you want to be part of the FDA public meeting? It was simple for me, I wanted to be part of the solution. When I was diagnosed with IPF I was quite the mess as many of us are. I’m a fighter. I just can’t sit back and do nothing. …

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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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Selfcare

It’s Self-Care Day! 7 “pillars” for taking care of you

Today is International Self-Care Day. There’s even a Senate resolution designating July 24 as a day to recognize the importance of self-care in the U.S. (it’s on 7/24 because, ideally, it should be a focus 24/7 for everyone). Has your self-care — from diet and hydration to hygiene and hobbies — been slipping because of competing priorities? Bring it back into focus with these “seven pillars” recommended by health care experts – plus some easy TLC ideas from your fellow member, Laura. What are the “7 pillars”? The International Self-Care Foundation has developed what it considers The Seven Pillars of Self-Care: Pillar 1 – Knowledge and health literacy: Finding health information and ways to understand it so you can make appropriate health decisions Pillar 2 – Mental well-being, self-awareness and agency: Getting health care screenings; “knowing your numbers” for important stats like body mass index (BMI), cholesterol and blood pressure; and keeping tabs on your mental health Pillar 3 – Physical activity: Staying as fit as possible (talk with your doctor about a healthy exercise plan that works with your condition) Pillar 4 – Health eating: Keeping a nutritious, balanced diet Pillar 5 – Risk avoidance or mitigation: Quitting tobacco, limiting alcohol use, getting vaccinated, practicing safe sex and …

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Treat yourself: 6 self-care tips for the hectic holiday season

The holidays are stressful enough for people living without illness. When you have a health condition, or care for someone who does, the hustle and bustle of this time of year – plus the sky-high expectations for a magical time – can be physically and emotionally draining. We’ve rounded up self-care tips to help you tend to your mental and physical health. 1. Take stock of your feelings. If you’ve experienced a lot of losses or changes in your life since last holiday season, it’s natural to feel grief or some extra stress this year. Acknowledge and express your feelings. “You can’t force yourself to be happy just because it’s the holiday season,” Mayo Clinic points out. 2. Connect with others if you’re lonely. If you’re feeling isolated, talk with a friend or family member, or find a local event to attend (such as a holiday concert or a volunteer/charity event, if you’re able). Also, touch base with your community on PatientsLikeMe and look for live-streamed concerts and events online (check out these 12 live-streaming apps) if your condition is keeping you at home these days. 3. Dial back expectations and plans. Be realistic about what’s possible for you this …

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Amplifying the patient voice on health care: Real people, real change

In 2017, patients like you participated in research, attended conferences and took action on important health care changes. Check out some of the ways the PatientsLikeMe community is raising a unified voice on health care. “Patients are a key piece to healthcare’s puzzle” Back in May, PatientsLikeMe, the Duke-Margolis Center for Health Policy and Arc Fusion teamed up with strategic thinkers and doers from across the health care spectrum— from clinicians, payers and policy makers to FDA regulators, journalists and attorneys. The goal of the event was to discuss how real-world health data, generated by real people like you on PatientsLikeMe, can shape decision making in the health care industry. PatientsLikeMe members attended the event including Laura, Geof, Jim, Letitia, Gary, Lisa and Allison. After an evening of frank conversation, eclectic talks and performance, Laura wrapped up the event with a moving rendition of Ragtime’s Make Them Hear You. Reflecting on the event she said: “Patients are the key piece to healthcare’s puzzle. Being a part of the Arc Fusion program and dinner was invigorating and so rewarding, as people from all aspects of healthcare, including patients like me, came together to place that puzzle piece. I can’t wait to continue …

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