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Fibromyalgia Podcast®

Tami Stackelhouse

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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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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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Fly Girl with Fibro

Fly Girl with Fibro

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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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Fibro com Fibra

Fibro com Fibra

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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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Spotlight on Pulmonary Fibrosis

Boehringer Ingelheim

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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 Fibromyalgia Podcast

Olga Pinkston MD

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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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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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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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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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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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We’re going to Brazil for this podcast. Brazil is famous for some soccer players; you remember Pele and others. It’s the largest country in South America, it has 4 times zones…60 percent of the amazon rainforest is in Brazil, their flag has 27 stars on it and they speak Portuguese there. And the food looks amazing there. I have never been to Brazil…
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So many people with cystic fibrosis have gut pain. It is often times, debilitating. Dr. Matthew DiMagno and Dr. Jorge Machicado are working to find answers to the suffering of people with CF, and others without. Dr. Machicado is a Clinical Assistant Professor in the Division of Gastroenterology and Hepatology at the University of Michigan. Dr. Mach…
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GLP-1 medications like Wegovy, Ozempic, and Mounjaro are all the rage right now. Originally marketed as drugs to help diabetics with insulin resistance, they were later discovered to help people lose weight. With those possibilities, GLP-1 meds are positioned to revolutionize health in the US since about two-thirds of the population is either overw…
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Maureen Electa Monte and I go ... way back! When she was an engineer, and doing photography, she photographed our first Portraits of cystic fibrosis black and white calendar in 2003. The wives of the Detroit Tigers, pretty much all of them pregnant, played in our first celebrity softball game. They played against law enforcement at a ballpark in St…
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Aliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she's a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA. Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her with a CF Impact grant to get it started. Aliyah launched …
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“How do you propose we help low-income individuals with CFS and fibromyalgia? Self-care and wellness are rooted in privilege, choice, fellowship, support, time, and money to invest in themselves.” So many people living with chronic illnesses are forced to navigate the issue of how best to support themselves with limited resources. While you’ll ofte…
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Canadian, Vicky Maldonado is the mother of a young boy living with a rare genetic form of CF. Sebastian is 6 years old, and a twin. The road to diagnosis was challenging. Sebastian was diagnosed with two rare CF genes after repeated respiratory infections and two hospitalizations. “We were told that Sebastian likely didn’t have CF because he’s “not…
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A better future for health for: All of Us! Dr. Josh Denny is the All of Us Research program, CEO. A program that comes from the National Institute of Health. The Bonnell Foundation is all about Science and Innovation! And he has a CF connect via his father! The goal of All of Us is to enroll 1 million people to build one of the most diverse health …
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Exercise is one of the foundational pillars of health, but with fibromyalgia, we have extra sensitive bodies and nervous systems, and we need to be gentle. That means finding the right exercise to meet our needs can be tricky. Today, Tami is excited to introduce you to a tool helping her feel even better and that she’s recently been obsessed with: …
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Você sabe o que é contaminação cruzada, como ela acontece na fibrose cística e os principais cuidados para evitá-la? As respostas para essas e outras perguntas relacionadas ao tema você confere neste novo episódio do Conversando sobre a Fibrose Cística. Para apoiar esse e outros projetos do Unidos pela Vida, basta acessar www.unidospelavida.org.br/…
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(Please follow us wherever you get your podcasts, rate us and/or comment. Thank you) Part of the Bonnell mission, while doing these podcasts, is to raise awareness and shine the light on other Foundations who are also doing great things. Today we’re going to tell you about the CF Trust in the United Kingdom. Belinda Cupid is the Senior Impact Advis…
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A consulta pública nº 03 do Protocolo Clínico e Diretrizes Terapêuticas (PCDT) de fibrose cística já está aberta para receber a sua contribuição até o dia 28 de fevereiro de 2024.Neste novo episódio, a fundadora e diretora executiva do Unidos pela Vida, Verônica Stasiak, trouxe mais informações sobre como participar e valorizar a sua contribuição. …
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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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This is our third podcast with Alan Klein, the Chief Development Officer Healthwell. As a reminder Healthwell was paying about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors they stopped helping existing patients and couldn’t help new applicatns with their CF bills. Healthwell …
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Rest is not a luxury. It’s required for healing your mind, body, and soul. A month and a half into the new year, everything around us is about making this your best year ever. From classes to articles, social media posts, and podcast episodes, there’s so much messaging about becoming a new and better version of yourself. While growth is a good thin…
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(Please consider subscribing to our podcast and rating it. It helps us with promotion. Thank you) What a treat for all of us today. Nicholas Kelly is in the house. I've wanted him on our podcast for a while. Nick was diagnosed with CF when he was 3 months old. Nick has so many accomplishments. He earned a bachelor’s and master’s degree from Bowling…
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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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Karen McEwan’s daughter, Elana, is 20 years old. It’s been a complex journey from birth to today. Elana suffers from a rare, incurable disease called Primary Ciliary Dyskinesia (PCD). This is the first podcast that is not about cystic fibrosis specifically, although you will see the connection. It’s about chronic illness and Mom’s connecting and pa…
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Most of us with fibromyalgia have to spend a lot of physical and emotional energy teaching the people in our lives about our condition. From friends and family to doctors and coaches, it can be draining. That’s just one of the ways working with a Certified Fibromyalgia Coach® transformational. It’s invaluable to have someone in your corner who know…
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Rena Barrow has two kids with CF, Jarrod is 22 and Jahsir is 3 years old. Over the years she’s witnessed a discrepancy in care for people of color. Even after her 22 year old son was diagnosed, doctors weren't sure her newborn baby had CF, They told her, "Maybe it was sickle cell." She fought until her son Jahsir was properly diagnosed. The delay i…
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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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I am excited that all of you will get to meet Dr. Susanna McColley!!!! I was so impressed with her commitment to CF and her incredible medical and life knowledge. Dr. McColley works to promote equitable diagnosis and treatment in cystic fibrosis. As a white person, Dr. McColley talks about all that white privilege brings, and what we must remember …
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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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Caroline Heffernan talks to CF families about all sorts of things, employment, family support, housing issues, cross infection, fertility…you name it. Caroline talks all things CF. As someone with CF she knows what she’s talking about. She’ll even discuss End of Life with CF families. Caroline volunteers for CF Ireland. Caroline, is 53 years old, a…
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Carre Callaway (Queen Kwong) tours in the U.S., U.K. and wherever her music takes her. Carre ended her tour and was in Los Angeles when we talked with her on this podcast. She talks about how music was a coping mechanism for her chaotic life. When Carre was 17 years old, a chance meeting with Trent Reznor of Nine Inch Nails, turned her life around.…
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“Taking action and being clear about what we expect does not have to be disrespectful.” - Meredith Holley It’s very common for people with invisible disabilities like fibromyalgia to experience workplace conflict and discrimination because of it. From snide remarks to outright harassment, it can feel so isolating and even make your symptoms worse. …
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We often underestimate what we can accomplish in a year. The goal can seem so massive that we think we’ll never get there and don’t even bother to try. That’s why it’s so important to hear stories of hope from people who have been where you are. There is so much you can do in a year; whether or not you go for it, the year will go by. It’s up to you…
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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 enviada pelo nosso público: “Por que o suor de quem tem fibrose cística é mais salgado que o normal?” Quem responde…
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