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Conteúdos sobre a fibrose cística criados pelo Unidos pela Vida - Instituto Brasileiro de Atenção à Fibrose Cística, uma das 10 melhores ONGs de pequeno porte do Brasil. Acesse www.unidospelavida.org.br e conheça mais sobre o nosso trabalho. As informações aqui contidas tem cunho estritamente educacional e não pretendem substituir a consulta médica, a realização de exames ou o tratamento médico. Em caso de dúvidas fale com seu médico.
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Tired of being held prisoner in your own body? Tami Stackelhouse is an author and Master Certified Fibromyalgia Coach® who has gone from disabled to thriving. In this podcast, Tami brings together top fibromyalgia experts and advocates, creating a virtual dream team to help you take back control of your life and health. From doctors and researchers in the traditional medical setting, to coaches and providers of alternative and natural treatment options, this podcast will empower you to feel ...
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Dan Neuffer author of CFS Unravelled and creator of the ANS REWIRE recovery program shares his knowledge on healing and recovery from ME, CFS, Fibromyalgia, POTS & MCS. Episodes include discussions as well as interviews with recovered patients and expert practitioners. **MEDICAL DISCLAIMER**: Dan Neuffer, CFS Unravelled or ANS REWIRE do not provide medical advice, and the information available in this video does not offer a diagnosis or medical advice of any kind. The content are opinions an ...
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Fly Girl with Fibro

Fly Girl with Fibro

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Havi
 
Life from the point of view of someone living with some invisible illnesses. Nothing major, just breaking the stigma of what illness is “supposed to look like.” Real life, no filters. Support this podcast: https://podcasters.spotify.com/pod/show/flygirlwithfibro/support
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La fibrosis quística es una enfermedad crónica y progresiva, que aparece en las primeras etapas de la infancia y que afecta a múltiples órganos del cuerpo, (como son los pulmones, intestinos, páncreas, hígado...) Esta enfermedad la provoca la producción de secreciones espesas que dan lugar a obstrucciones e infecciones Autor: InstitutoBernabeu/
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O relacionamento com a fibromialgia pode ser um fardo bem pesado quando o portador não tem informações suficientes sobre o que é e como agir para ter um pouco de qualidade de vida e diante das pessoas que desconhecem a doença. O nosso objetivo é levar um conteudo que te ajude a melhorar seu dia a dia e te traga conforto emocional. - Instagram/ Tio Tok: @fibrocomfibraoficial - Whatsapp: (11)99787-6698 - email: fibrocomfibraoficial@gmail.com
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In this podcast series, we bring together leading physicians, patients and patient advocates from Europe and Israel to discuss topics that are important for patients with pulmonary fibrosis. Each of the episodes will address a specific topic with the overarching objective to provide support to patients throughout the different stages of their journey.
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Mind Your Fibro podcast is dedicated to fibromyalgia.Dr. Olga Pinkston, the host and board-certified rheumatologist, discusses up-to-date information about fibro, its treatment, and the biology and psychology of this condition. It covers pain science education and the current complementary and alternative methods available to improve your symptoms. Many things influence the development of fibromyalgia, trigger fibro flares, and produce other symptoms like IBS/irritable bowel syndrome, depres ...
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Es cansado ser prisionero de tu propio dolor. Soy Gina Elvira: madre de 4, bailarina de flamenco, ama de casa y tu conductora. Te presento un podcast en español sobre el mundo de la fibromialgia. Un espacio donde encontrarás apoyo, comprensión e información única sobre este tema. Dirigido también a personas que quieren cambiar su percepción y brindar más entendimiento a sus seres queridos que la padecen. Sigue mi blog! https://metocovivirconfibromialgia.tumblr.com
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Breathe In: A Cystic Fibrosis Podcast

Gunnar Esiason and the Salty Cysters

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A dynamic podcast exploring the different experiences people with cystic fibrosis may face during their lives. Gunnar Esiason joins Tiffany Rich and Lea Faraone, otherwise known as the Salty Cysters, to talk about the in's and out's of cystic fibrosis from some of the anxieties and stresses that patients face to some of the lighter sides of the disease. Breathe In: A Cystic Fibrosis Podcast aims to characterize the disease in a positive way while showcasing the challenges that people with cy ...
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Cystic fibrosis (CF) is one of the most prevalent global congenital disorders, affecting some 70,000 individuals worldwide and 30,000 children and adults in the United States. While clinical efforts are expanding worldwide to improve diagnostic testing and treatment approaches for this progressive lung disease, targeted therapies for CF against any specific mutation remain elusive. The Cystic Fibrosis in Focus series gathers the latest information from leading medical experts devoted to adva ...
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WTCF! A Cystic Fibrosis Podcast

What The CF! A Cystic Fibrosis Podcast

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When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey. We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living wit ...
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Pain is a common complaint in the primary care setting, and the standard of practice is to assess for the cause of the pain. Patients often present with painful symptoms of unknown etiology that cannot be defined by the degree of inflammation or damage to muscle tissue. Fibromyalgia affects an estimated 10 million people in the United States and is especially common in women. Many patients have additional symptoms including fatigue, headaches, irritable bowel syndrome, cognitive problems/mem ...
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From news reporting, to CF and beyond. Laura talks about her journey. The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off, and now look at it! We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Educatio…
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In over a decade of helping people recover, I have found that whilst knowledge can be key, often other factors are more important. In this video, we delve into why knowledge alone isn't enough for recovery from chronic illness like ME/CFS, Fibromyalgia, POTS, MCS, PVFS (or long-covid). We uncover potential missing pieces in your journey. Discover w…
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Whether we're talking about pain, fatigue, or brain fog, there’s a massive difference between preventing your symptoms and trying to treat them after they’ve flared up. Getting your symptoms back to a manageable place in the middle of a fibro flare is like trying to catch a runaway train. Sometimes, when that happens, the only thing to do is to let…
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We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988. Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her…
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Quando juntamos as forças para enfrentar um desafio, tudo fica mais leve. Até mesmo a fibrose cística, doença genética rara e ainda sem cura, fica mais fácil de encarar. Quanto antes for diagnosticada, com a triagem no Teste do Pezinho e confirmação pelo Teste do Suor ou exames genéticos, mais cedo é possível iniciar o tratamento. A informação pode…
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Welcome to the final episode of our special Be a Coach series. So far, I’ve answered questions about our Certified Fibromyalgia Advisor® class and what it takes to become a Certified Fibromyalgia Coach®. Some of the topics covered in the first three parts of this special series were what a Certified Fibromyalgia Advisor® and a Certified Fibromyalgi…
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“You need to make room for yourself.” - Lauren Vazzano If you’re struggling with fibromyalgia and juggling the responsibilities of motherhood, you’re not alone. The good news is that you can feel better with the right strategies and support. Making yourself a priority and improving your health is the best way to support your family and help them to…
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Join us in this transformative episode as Lynne, an experienced nurse, bravely shares her journey to recovery from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). As a medical professional, she had been skeptical about the validity of ME/CFS diagnoses. However, Lynne's perspective shifted dramatically after facing years of debilitating…
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In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Associati…
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Welcome to episode 03 of our special Be a Coach Series. In this series, I answer questions about our Certified Fibromyalgia Advisor® class and what it takes to be a Certified Fibromyalgia Coach®. In episode one of the series, I explained what a Certified Fibromyalgia Advisor® is and what a Certified Fibromyalgia Coach® is. Episode two of the series…
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Você sabe quais são as principais diferenças e semelhanças entre a Doença Pulmonar Obstrutiva Crônica, a DPOC, e a fibrose cística? O Instituto Unidos pela Vida convidou a pneumologista Dra. Angela Honda para trazer mais informações sobre o tema neste episódio do Conversando sobre a Fibrose Cística. Para apoiar esse e outros projetos do Unidos pela…
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“Give yourself some grace and just know that you've done this for a reason, and it will make your life better.” - Deb Thompson Many times, people with fibromyalgia put off surgeries that they need to have because they're worried about the inevitable fibro flare that's coming. When we have surgery, chances are that it’s going to cause a fibro flare.…
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Welcome to episode 02 of our special Be a Coach Series. In this series, I answer questions about our Certified Fibromyalgia Advisor® class and what it takes to be a Certified Fibromyalgia Coach®. I cover all the basics… the who, what, when, where, why, and even the how. Don’t understand what a Certified Fibromyalgia Coach® or Adviser is? No problem…
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In the US, approximately 1 in 13 women and 1 in 20 men are diagnosed with fibromyalgia. To put those numbers in perspective, breast cancer affects 1 in 8 women, cervical cancer affects 1 in 13 women, and colon cancer affects 1 in 25 women and 1 in 23 men. Yet, even though the prevalence of fibromyalgia is in a similar range, screening for these can…
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Looking for treatments to help you recover from ME/CFS, PVFS (long-covid), Fibromyalgia or POTS or related illnesses should surely be a good thing. It’s what most of us do whilst we are ill until we eventually give up or are told ‘there is not cure, so you can’t recover’. But whilst it can be key to your recovery breakthrough, it can also have sign…
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As a master Certified Fibromyalgia Coach®, author, and fibro podcaster, the questions I’m asked more than any others are: How do I get better? How do I improve my Fibromyalgia so I can get back to living the life I want to live? While those sound like simple questions, they do not have simple answers. We all have similar symptoms, what helps you fe…
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In this episode, we sit down with Dr. Michael Lenz, a dedicated physician specializing in fibromyalgia, ME, CFS, POTS, and related illnesses. Dr. Lenz discusses his conservative approach to medications and emphasis on lifestyle medicine, particularly for children with these conditions. A notable part of the discussion delves into the common comorbi…
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“I’m having trouble finding my team, as you call it. I often feel so alone in this. How can I best find a doctor to suit my needs?” Choosing your healthcare team is a highly personal process that requires you to really understand your specific wants and needs. There are so many options, and, let's face it, there aren’t a whole lot of good doctors o…
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O Vírus Sincicial Respiratório, também chamado de VSR, é um dos maiores causadores de infecções respiratórias em crianças com menos de dois anos no Brasil, e a infecção por este vírus pode trazer complicações para pessoas com fibrose cística. Mas como evitá-lo? Como reconhecer os sintomas e quando buscar ajuda médica? Essas e outras perguntas foram…
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Today, Tami has another bonus episode for you! Tami was recently interviewed by Meghan DeVito for the Kingdom Employee podcast. Once again, she’s sharing this conversation with you as a peek behind the curtain into an area of her life you normally don’t see. In this conversation, Tami shares more about her spirituality and how her Christian beliefs…
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Diane Shader Smith’s daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter’s diary, "Salt in My Soul". This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons. Diane Shader Smith is now releasing a second book on b…
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In 2009 - two years after her diagnosis - Tami started working with a coach and making positive changes in her life. At the same time that she saw her fibromyalgia begin to improve, she started noticing beautiful cherry blossom trees everywhere. They weren’t new, but her awareness of them was. Knowing that they frequently appear in Japanese and Chi…
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Children’s Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It’s not a Medicaid program. Access to the program has nothing to do with your household income. The program has a lot of benefits. CSHCS covers transportation that can include airfare a…
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It’s finally time to share some of my health struggles during the last 6 years. It seems like a good opportunity to speak about how resilient ME/CFS, Fibromyalgia, POTS, MCS PVFS (or long-covid) recoveries can be – after all, when we recover we often can’t help but ask ….”will it last?” SHOWNOTES: https://cfsunravelled.com/episode20 **MEDICAL DISCL…
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In this special bonus episode, Tami is sharing a side of things you normally don’t see. Today, we’re going behind the scenes of her business to share an interview she did with Cassie Parks from build. grow. profit. Cassie’s podcast is all about how people built and grew their businesses to the point of profitability. If you have ever been curious a…
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With fibromyalgia, balancing acceptance and hope can sometimes feel a little like being stuck between a rock and a hard place. Acceptance isn’t about staying where you are. It’s about embracing the unknown and allowing your body right now while being open to letting her be who she needs to be and become who she needs to become. On the other side, h…
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Today, I have another bonus episode for you. Back in April, I was interviewed by Adam Devaney for the Loving Our Life’s Work Podcast, and Adam has graciously agreed to let me share that conversation with you. In our conversation, we explore our purpose, authenticity, and the transformative power of self-discovery. I specifically dive into how I cam…
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Minuto Fibrose Cística é um programa produzido pelo Instituto Unidos pela Vida e tem como proposta trazer, em pílulas de áudio, perguntas e respostas sobre a fibrose cística. Neste episódio trazemos a resposta para a seguinte pergunta: “Qual é a importância do Programa Nacional de Triagem Neonatal para a fibrose cística e outras doenças raras?” Que…
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Shortly after we did this podcast Matt died from complications of cystic fibrosis. With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about concern for his health. Thanks to Jenn, his family and to M…
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Movement is not a way to pay for what you’ve eaten or shrink your body. It’s a way to care for your body and feel how you want to feel in it. If we reframe our thinking, moving away from focusing on what we want our bodies to look like and toward what we want them to do, it becomes easier to treat ourselves with kindness and respect. You can’t cont…
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As people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause. I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. There is so little discussion and education about women and …
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Today, I'm sharing the other half of my conversation with Dr. Andrea Moore. In the previous episode, I interviewed Dr. Andrea about her work. Dr. Andrea has her own chronic pain story, and she now helps those suffering from chronic pain find harmony and safety within their bodies. Today's bonus episode is a replay from her podcast, Unweaving Chroni…
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Dr. Caleb Bupp. In my opinion. A scientific star. He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius. You will love this podcast. We talk about rare disease, his family and how he discovered and helped families who had no rare disease answers, until they met him! An absolute scientific rock star. …
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“Sometimes taking care of yourself means not doing all the things.” When you have chronic pain, it’s easy for self-care to become a job where you have to do all of these things, or else you haven't taken care of yourself. But self-care should nourish you and fill your cup; it shouldn’t feel like a burden. Healing requires us to develop a toolbox of…
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Cambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar struggles. Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada. These two women connected, as you’ll hear, because their sons share the same mutation. Row…
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In this special bonus episode, I'm sharing a recent guest appearance I made on the Beyond Diagnosis podcast hosted by Rita De Michele. Beyond Diagnosis helps women over 40 who are not getting the solutions or outcomes they would like to see from traditional medical care. Rita is a Mindset and Empowerment Coach and, in this interview, we actually st…
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Em maio de 2024, o modulador Trikafta® começou a ser dispensado no Sistema Único de Saúde (SUS) para as pessoas elegíveis e com prescrição médica para o uso. Mas quem é elegível e como ter acesso ao medicamento? Neste episódio do Conversando sobre a Fibrose Cística, conversamos com a fundadora e diretora executiva do Instituto, Verônica Stasiak, pa…
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Did you know most states have programs for CF families, and they don’t have to do with your income? Michigan has one of the best programs in the Country. It’s called Children’s Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about it. Brandi Berry, LLMSW is the Program Coordinator of t…
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“We can help almost anyone feel better because we have so many tools at our disposal.” - Dr. Robin Pfaff Managing fibromyalgia requires a holistic approach that goes beyond physical symptoms and equally addresses emotional, mental, and spiritual health. Our well-being is multidimensional, and each aspect requires attention and care. To explore this…
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A new CF modulator could be on the horizon. Professor Dr. Bhanu Jena is exciting to tell us all about it. Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in Bhubaneswar, Odisha, India, He got his masters in zoolo…
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In this special bonus episode, I'm sharing a recent guest appearance I made on the Power in Motion Podcast hosted by Kim Hagle. Kim is a Certified Personal Trainer, Non-Diet Nutritionist and Body Image Coach – who’s on a mission to empower women to break free from tortuous exercise, restrictive eating and body shame, so they can free up their time,…
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Approximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that will help her. Her Foundation, Emily's Entourage, is a l…
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“No matter how small, any type of advocacy you do will have an impact.” - Lily Garner According to the NIH, fibromyalgia affects 1 in 13 women in the US. That means about twice as many women are diagnosed with fibromyalgia as are diagnosed with colon cancer, and while you're not going to die from fibromyalgia, living with fibro pain and fatigue can…
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Living legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You’ll hear the connection Laura and Mitch have, and they didn’t know it until this podcast! Dr. Drumm is a living CF hero. Dr. Drumm earned his doctoral degree while in…
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Minuto Fibrose Cística é um programa produzido pelo Instituto Unidos pela Vida e tem como proposta trazer, em pílulas de áudio, perguntas e respostas sobre a fibrose cística. Neste episódio trazemos a resposta para a seguinte pergunta: “O que é nutrição especializada e quando ela deve ser realizada na fibrose cística?” Quem responde essa pergunta é…
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Do you know what is needed before you have a lung transplant? Or even how it works? More and more adult CF clinics are explaining the details to adult patients, but if you're a CF parent, there is a lot you may not know. We welcome Dr. Ryan Hadley. Dr. Hadley is at Corewell health in Grand Rapids. He is an assistant Profession of Medicine in pulmon…
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Have you ever wondered why some people have an easier time managing their fibromyalgia than others? We all have natural strengths and weaknesses and approach life in a unique way. Managing our fibromyalgia is no different. Our personalities play a central role in how we approach life and our fibromyalgia, and research has shown that our personality…
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Everyone always asks me "What does it take to run a Foundation?" So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation. Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is all about! Please follow us on social media! Please cons…
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He’s been arrested. He’s CIS gender with a wife and kids. Rabbi Mike Moskowitz is also an orthodox Jew’is and he is one of the biggest supporters of the queer community. Rabbi Moskowitz is the Scholar-in-Residence for Trans and Queer Jewish Studies at Congregation Beit Simchat Torah, the world’s largest LGBT synagogue. He is a deeply traditional an…
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You're probably aware of the need for more research funding to help us develop new treatments for fibromyalgia. You’re probably also aware of the lack of training most doctors have when it comes to fibromyalgia. But did you realize that the two are connected? Research not only uncovers new potential treatments but also shapes how and what medical s…
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