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Tired of being held prisoner in your own body? Tami Stackelhouse is an author and Master 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 your best a ...
 
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.
 
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.
 
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WTCF! A Cystic Fibrosis Podcast

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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 ...
 
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 ...
 
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.
 
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/
 
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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Fibro com Fibra

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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
 
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
 
A dynamic Cystic Fibrosis Podcast, educating people on the different experiences and lives that CFers face. Discussing all sides of CF, including the fearful, the ambitious, the emotional and the challenging. A podcast that is purposely made to educate but more importantly comfort fellow CFers and support the CF community💛
 
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 ...
 
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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show series
 
When we hear stories we can relate to, it brings hope that healing is possible for us. In the sixth installment of our Stories of Hope and Healing, Tami shares the stories of three recent graduates of the Certified Fibromyalgia Advisor® program. During the program, these women improved their fibromyalgia symptoms by an average of 51% in only three …
 
Dr. Harutai Kamalaporn sees 12 of the 30 patients diagnosed with CF in Thailand. The challenges she faces are: lack of medications, equipment and sweat chloride tests at all three hospitals. Dr. Kamalaporn continues to advocate for more testing machines. . Some countries, such as India and Bangladesh have developed their own indigenous method for s…
 
A fibrose cística é uma doença genética rara e ainda sem cura que causa sintomas como tosse crônica, pneumonia de repetição, diarreia e suor mais salgado que o normal. Triada pelo Teste do Pezinho e confirmada por meio do Teste do Suor, seu tratamento envolve várias etapas, como realização de fisioterapia respiratória, atividades físicas, inalações…
 
Ingrid chats with Helen Ulyatt, mother to an active 9-year-old CFer called Sophia. They chat about how she prepped for starting school and all the fears and worries surrounding this milestone, as well as managing trips to camp and hopes for the future. ZOONO DISCOUNT CODE INSIDE! Tune in to get your discount code to receive 2 x 50ml Zoono hand sani…
 
If you are taking one of Vertex’s medications, you may be aware that the GPS program at Vertex recently made changes to its co-pay assistance program. In September of 2022, a patient advocate at Vertex reached out to The Bonnell Foundation. The reason for the Zoom meeting was to explain how the co-pay assistance program would change in 2023. It’s m…
 
Rachel tells her story of Fibromyalgia Remission - it's interesting to hear her say that despite being healthy again and symptom free, she still says "I have fibromyalgia". We discuss how she became ill and how she went into fibromyalgia remission and the differences between recovery, cure and fibromyalgia remission. For full show notes visit: http…
 
So much healing happens when you talk to somebody who truly understands you. One of the more common questions Tami receives is a variation of “Can you actually help me?” Sometimes this comes up because you’re worried that you're too sick; sometimes, it's the opposite. Maybe you've tried so many things that you're afraid to get your hopes up and try…
 
19 year old Atef Choudhury and 18 year old Naim Mashni are both sophomores at MSU, and they have found their voice. Atef has a nephew with CF and that is what made him want to start to raise awareness on campus. And so Cure Found MSU was born. In their young lives this two men have accolades to long to list here, just know they are smart and motiva…
 
Did you know your child should visit a pediatric dentist? Did you know that people with CF generally have better dental health than the rest of the general population? Are you familiar with a toothbrush that connects to your phone and will let you know if you're brushing your teeth correctly? Did you know if your CF child has reflux (very common in…
 
I need to take a break from the podcast this week to practice good self-care, so I don't have a new episode for you today. I'll have a new episode for you on January 17th. In the meantime, feel free to check out any of the previous episodes to hold you over until then. For daily doses of hope, inspiration, and practical advice, join Tami on Faceboo…
 
Not everyone with CF enjoys the same level of care. Tragically it depends where you live. Some countries don’t even recognize the disease. If a country doesn’t recognize CF, that means medications aren’t available and there is no health insurance coverage. All of us are working together to change the world for people who have CF. Doing his part is …
 
When you're healthy, you can be more you and bring your special magic to the world. Over twenty years ago, when today’s guest Ann Garner Coulter was diagnosed, we were in what Tami describes as the dark ages of fibromyalgia. There were no FDA-approved medications, and it was even more challenging to find a doctor who knew enough about the condition…
 
Sometimes we are overwhelmed by what is the most important thing to do for recovery from Fibromyalgia, ME/CFS (chronic fatigue syndrome), POTS or MCS. So I share my thoughts and experience around this in this short recovery snippet.Dan Neuffer
 
Kids are curious, and they’ll ask anything and everything about what’s different about you. Today Tami is sharing a fabulous resource that will help you explain fibromyalgia to the little ones in your life. After leaving an office job of twenty years, Melissa started a new career working with young children. While working with little kids, they ine…
 
Attorney Jen Weber is 49 years old and waiting to have her third lung transplant. Weber lived in Indiana until this third transplant, when she had to move to Durham, North Carolina to be near her transplant hospital: Duke University Health. Weber also started a non-profit five years ago that meets inpatient and outpatient needs ( for example: pajam…
 
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 convidamos o Coordenador do Setor Integrado de Reprodução Humana da UNIFESP, Dr. Renato Fraietta, para responder a seguinte pergunta enviada por uma jovem com f…
 
Episode 39 - End of the Season 1 Reflection I am recording the podcast trailer a bit later than I should have. I am approaching the 1st anniversary of releasing my first episode. I announced my 1st episode to the world on November 30th, 2021. What I envisioned as a resource for my clinic patients has grown into a project I had no idea it would beco…
 
Episode 38 - The Pushing & Crashing Cycle Please Rate , Review, & Follow this podcast to get updates. Do you often feel that you are stuck in the pushing & crashing loop? Do you find yourself caught in a frustrating cycle, swinging between overactivity, and forced rest. When your symptoms are low, you push to get as much done as possible because yo…
 
Around one-third of fibromyalgia patients also have Sjögren's Syndrome, yet most don’t know about it. Sjögren's Syndrome is an autoimmune condition that affects the moisture-producing cells in your body. Today Tami is excited to share her conversation with Brenda Faverio, a graduate of the first Fibromyalgia Coach training class and one of the firs…
 
Fibromyalgia sleep and ME/CFS sleep are full of problems. Getting to sleep, staying asleep, and experiencing refreshing sleep all elude patients. Dr Jacob Teitelbaum is one of the world's leading Fibromyalgia, ME/CFS and POTS physicians and shares his experience and insights on sleep restoration in this episode of the Wisdom from the Other Side Pod…
 
People with fibromyalgia are significantly more likely to experience a sleep disorder. On top of that, some particular issues tend to happen when it comes to sleep and fibromyalgia. Last week Tami and her friend, sleep expert Sovann Pen, talked about the importance of sleep for your healing journey and how you can get better sleep. In today’s speci…
 
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 convidamos a psicóloga Tárcia Regina Dutra para responder a seguinte pergunta enviada por uma pessoa com fibrose cística: Quais os benefícios da realização de e…
 
While the focus is often on taking care of one’s physical well-being, the challenges of living with a chronic disease can take a tool on people’s emotional health. But it is important to know that you as a patient is not alone and that a variety of resources are available to help patient maintain a positive mindset. In this episode of “Spotlight of…
 
Unrefreshing sleep is one of the hallmarks of fibromyalgia, and it’s hard to face the day when you wake up feeling depleted. With Fibromyalgia, we find three significant sleep issues that we must address: struggle with getting to sleep, problems with staying asleep, and calming the overactive fight or flight so we can get restful sleep. Sleep is es…
 
We’re talking today with the founder of A Kid Again, Kathy Derr. It is a nonprofit organization that plans family adventures in many states across the U.S. and the adventures are free to families. Kathy Derr and two of her friends started the nonprofit camp 25 years ago. Kathy’s son Christopher died from an inoperable brain tumor. She started A Kid…
 
Episode 37 - Interview by the Support Fibro Network (Melissa Talwar) Please Rate , Review, & Follow this podcast to get updates. The International Support Fibromyalgia Network (Support Fibro) - https://supportfibromyalgia.org/ Fibromyalgia Community Conference 2022 - https://hopin.com/events/fibromyalgia-conference/registration RheumMate membership…
 
Seguir uma alimentação balanceada é peça chave para se ter cada dia mais saúde, disposição e qualidade de vida. Isso é importante para todos, e para quem tem fibrose cística não é diferente. A doença pode afetar o aparelho digestivo, causando, em alguns casos, uma redução na produção das enzimas responsáveis pela digestão dos alimentos e até mesmo …
 
As an eternal optimist, Tami likes to keep this podcast positive, often focusing on ways you can feel better with fibromyalgia. But you can't talk about fibromyalgia without exploring the darker side of things, like the grief many of us experience. Grief affects all of us physically, emotionally, and energetically. Fibromyalgia can often seem like …
 
Should you make a change to a new mind/body program, physical treatment approach, health coach, or other health care practitioner for your recovery from ME/CFS, Fibromyalgia, POTS or MCS? In this short recovery snippet, we discuss the options and seek to understand the reasons why different approaches fail so that we can decide whether to persist o…
 
We discuss the journey to diagnosis for our son Orson at six months old. From pregnancy and birth, tests, diagnosis and processing the news. It's emotionally a highly charged episode but we end up laughing quite a bit, which we're pleased to be able to do together through this crazy journey. We'd love to hear from you. You can leave a voice message…
 
Episode 36 - 30-day challenge: Drinking more water Please Rate , Review, & Follow this podcast to get updates. Today we are talking about: Drinking Water. It's important because water is essential to good health. Are you getting enough? A disclaimer: this is for your information only. As always, please consult with your doctor, especially if you ha…
 
There are various actions patients with pulmonary fibrosis can take to manage their symptoms and help them live their life to the fullest. While pharmacological treatments are an important tool there are many things that patients can do to manage their health. In this episode of Spotlight on Pulmonary Fibrosis, we are joined by pulmonologist Dr. Ra…
 
Receiving a diagnosis is a key step on the patient journey, but what happens next? Based on the patient characteristics the physician will prescribe a pharmacological treatment, but it can be challenging to understand how it works and how it together with the disease itself might impact their lives. In this episode of “Spotlight of Pulmonary Fibros…
 
If you’re struggling right now with working with fibromyalgia or other chronic illnesses, there is hope. Whether you’re an employer or an employee, today’s interview will be fabulous for you. Tami is thrilled to share this interview with Certified Fibromyalgia Coach® Julie Hamilton about her new book, Chronic Illness at Work. One of the most import…
 
There are many types of pulmonary fibrosis, including Idiopathic Pulmonary Fibrosis (IPF). However, the journey towards a diagnosis of IPF is not always straight forward and it can also be difficult to understand the diagnostic process. In this episode of “Spotlight of Pulmonary Fibrosis”, we hear from Patient A.M. an IPF patient from Bulgaria, Dr.…
 
Dr. Jennifer Shedden of Genentech reached out to the Bonnell Foundation to raise awareness about cystic fibrosis in the Hispanic community, and the non-CF community. We started the CF Familia page! We recently did a podcast together that focused on our CF Familia page. This page on our website focuses on the challenges the Hispanic community runs i…
 
Episode 35 - Do you have a compelling reason to change the way you live your life? + RheumMate announcement Please Rate , Review, & Follow this podcast to get updates. Today I share with you a part of the workshop I just concluded, the "Healing from the root". In this part, I discuss why many people do not make the changes they want to make. I ofte…
 
After our last Ask the Coach episode, where Tami covered the three FDA-approved medications for fibromyalgia, we received many follow-up questions from listeners. Questions like: What’s the difference between being addicted and being physically dependent? How can you safely come off your medication? When is it time to reduce or discontinue certain …
 
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 convidamos nossa fundadora e diretora executiva, Verônica Stasiak Bednarczuk de Oliveira, para responder a seguinte pergunta enviada por um dos nossos seguidore…
 
3 PART LIVE FREE ONLINE WORKSHOP: HEALING FROM THE ROOT: Learn the role of the nervous system in illness and healing. Register: https://www.rheumcoach.com/workshop Please share with others! Episode 34 - Living in Survival Mode Please Rate , Review, & Follow this podcast to get updates. Many patients tell me they are not living but merely existing o…
 
It's one thing seeing interviews with people that recovered, and another thing seeing them tell their stories in real-time. In this interview, Shannon tells how she recovered from fibromyalgia, ME/CFS and POTS after 7 years of illness. Her 2½ year journey was bumpy, with her actually worsening before she got better. This interview captures her jour…
 
Many of the symptoms people blame on fibromyalgia are actually due to coexisting conditions. Too many people go too long with the wrong diagnosis, taking inappropriate medications, and following unnecessary protocols because their provider didn’t identify the correct cause. This topic came up a lot in the last cohort of Certified Fibromyalgia Advis…
 
3 PART LIVE FREE ONLINE WORKSHOP: HEALING FROM THE ROOT: Learn the role of the nervous system in illness and healing. Register: https://www.rheumcoach.com/workshop Please share with others! Episode 33 - Fibromyalgia & Grief and the 5 psychological stages that may lead to acceptance and action. Please Rate , Review, & Follow this podcast to get upda…
 
The Children’s Organ Transplant Association (C.O.T.A), helps people waiting for transplants, fund the procedure and everything that surrounds it. Laura Bonnell learned about COTA when her nephews needed a bone marrow transplant (not CF related). When someone needs a transplant, they usually living in their home state and getting a transplant in ano…
 
In this episode, Ian and I review the brilliant film Never Better and chat with its writer-director Julianne Fox. Julianne, who has CF herself, filmed Never Better in late 2020 and received great reviews when it played at film festivals. W#e chat about how the project got started, her life with CF and more. We hope you enjoy this episode of the pod…
 
Episode 32 - Fibromyalgia and Pelvic Pain - part 2 Please Rate , Review, & Follow this podcast to get updates. Today I have a special guest - Theresa Feola. We will be talking about pelvic dysfunction in both men and women and available therapies. Theresa is a physical therapist who specializes in pelvic health. Today is part 2 of the interview, ep…
 
Connective Tissue Diseases (CTD) are disorders that exhibit autoimmune-meditated damage to various organs, one type of CTD is Scleroderma, also known as Systemic Sclerosis. Pulmonary Fibrosis is a lung manifestation that can develop in patients with Scleroderma. In this episode of “Spotlight on Pulmonary Fibrosis in Connective tissue Disease” we wi…
 
“I’d like to try Lyrica, but I worry about if I ever had to come off. Should I try it?” For today’s Ask The Coach episode, I’m answering this question sent in by Sarah in the UK. When treating fibromyalgia, we have to attack it from two sides. The first is addressing the fibromyalgia itself and the amplification of pain signals; the second is treat…
 
Confira nesta edição do Giro de Notícias sobre Fibrose Cística informações sobre a nova consulta pública referente ao Protocolo Clínico e Diretrizes Terapêuticas (PCDT) da fibrose cística, a entrega dos lotes do ivacaftor (Kalydeco) para distribuição, definição do preço do elexacaftor/tezacaftor/ivacaftor (Trikafta) pela Câmara de Regulação do Merc…
 
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