Bethan Youd has Polycystic Ovarian Syndrome, or PCOS. It’s a hormonal condition so common that one in ten women of reproductive age have it. Many of them, like Bethan, will be told upon diagnosis that it’s primarily a reproductive issue that can cause fertility problems. But Bethan’s message is that although it can mean difficulties getting pregnant, it should also be seen and treated as an overall medical condition – one that can cause significant weight gain that is not easily remedied by intensive exercise and diet, as well as blood sugar spikes, irregular periods, inflammation and hair loss. In this episode Bethan explains what major holistic based changes in lifestyle and how she eats has helped her overcome her symptoms. Bethan Youd on Instagram: healing_pcos_mama Wellbeing Magazine: Why is PCOS Misunderstood The New York Times : Polycystic Ovary Syndrome: What It Is, How to Manage It-----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the PCOS Community Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
When Heather Foisy was diagnosed with an autoimmune illness called Sjogren's Syndrome, she felt her world was falling apart. The disease had already been making her nauseous at every meal, and had caused such bad abdominal pain that even walking down the hallway could bring her to tears. But now, with the diagnosis, depression and loneliness set in. At the same time, however, so did a measure of denial. Heather, intent on distracting herself, continued to go out frequently with her hard-partying friends. That is, of course, until her body crashed and she realized she had to retool her life, all the way down to the way she socialized and made friends. In this episode Heather describes what she learned in forging a supportive network of friends and family in the wake of chronic illness. Related Links:Heather Foisy's advocacy blog: Phoenix Soul Warrior Heather on TikTok: @PhoenixSoulWarrior Free Prepping For Your Rheumatologist Appointment Worksheet: https://www.phoenixsoulwarrior.com/resources-1Facebook Online Support GroupSjogren's Foundation Butyoudontlooksick.com: The Spoon Theory The New York Times: Five Things I wish I'd known before my Chronic Illness -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Sjogren Community Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Phantom limb pain is the very real, sometimes excruciating pain and discomfort that occurs after a limb has been amputated. As many as 80 percent of amputees experience it. For some, it is accompanied by a related issue: residual limb pain, which refers to pain in the part of a limb that remains after amputation. Listen in to this conversation between two experts: Kiera Roche, a life-long athlete whose right leg was amputated below her knee after a car accident and Keren Fisher, a psychologist who researches this type of pain and helps people adjust to limb difference. Related Links:Limb Power: Advocacy for individuals with limb differenceThe Financial Times: Breakthrough in amputation narrows gap between human and machineAmplitude Magazine: New Wrinkles in Phantom Limb Treatment -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Phantom Limb Syndrome and/or Residual Limb Pain Communities Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Ellie Angold, a college student in California has Celiac disease, an autoimmune disorder of the gut triggered by gluten proteins in wheat and other grains. Her case is so severe that even trace amounts of gluten can leave her violently ill. When she found out there was such a thing as a gluten detection dog she decided to train a dog herself. So she bought an Australian Shepherd puppy and got to work. This is their story. Related Links: The Today Show: Gluten-sniffing dogs help people with celiac diseaseCeliac Disease Foundation: Can Service Dogs Help Sniff Out Gluten?The New York Times: Should You Screen Your Child For Celiac Disease? -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Celiac Community Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Related Links: The New York Times: What It Feels Like to Live with Parkinson’sBrain and Life: Boxing withParkinson’s Puts the Disease on the Ropes Cleveland Clinic: Exercise for People with Parkinson’s Disease-----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Parkinson's Community Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
More from Nathan Edwards:Nathan’s website: https://www.crohnsnaturally.com/Related Articles and Resources: The New York Times: Crohn’s Disease Is on the Rise MedPage Today: Dietary Interventions May Prove Helpful in Curbing Development of Crohn's Disease -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Crohn's disease community. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
More from Kaitlyn Cervi:Kaitlyn will soon be launching her own podcast called "Health of Everyday Life." You can check it out here: Instagram Facebook Page Related Articles and Resources: The Washington Post: Exercising with MS Should Be tailored to Each Patient John Hopkins Medicine: Multiple Sclerosis: Why are Women More at Risk? -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the multiple sclerosis community. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Related Articles and Resources: The New York Times: PCOS: What it is. How to Manage it Allure: Women with PCOS Facial Hair Explain Why They Choose to Celebrate Their Facial Hair -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the PCOS research community. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Related Articles and Resources: Kleine-Levin Syndrome Foundation Information from the National Organization for Rare Diseases The New York Times Magazine: "A Mysterious Sleeping Disorder That Turns Life Into a Waking Dream" Fox5 New York: "What is Sleeping Beauty Syndrome?"
Related Articles and Resources: Clare's Blog IC Facts from The National Institute of Diabetes and Digestive and Kidney Disease Washington Post: I’ve gained my life back’: New tests may help those with persistent urinary tract infections The Better Bladder Book, by Wendy L. Cohan -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Interstitial Cystitis research community. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Related Articles and Resources: Scientific American: Autism, It's Different in Girls Wired Magazine: The Underdiagnosis of Autism In Girls Is a Story of Gender Inequality Explaining Humans, award-winning book by Dr. Camilla Pang LISTEN Movie, by CommunicationFIRST, a 5 minute film by nonspeaking autistics Organizations: Autistic Women & Nonbinary Network (AWN) Ollibean Blog and Amy Sequenzia, a non-speaking autistic woman blogger CommunicationFIRST: Nonprofit dedicated to protecting the civil rights of the 5 million Americans who are unable to rely on speech alone to communicate -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Autism Spectrum Disorder research community. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Resources and Links Despite Lupus: Sara's book chronicling her experience with lupus The Despite Lupus blog Pillfold: fashionable medication pouches and totes designed by Sara Health Policy Partnership: Into the Unknown: Navigating Treatment Decisions during Pregnancy-----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Resources and LinksDr. Karkowsky's book: High Risk: Stories of Pregnancy, Birth and the Unexpected The New York Times: The Evolution of the Robot Doctor: Where just last year, communication with patients and families through a screen felt crass, now it’s the compassionate thing to do News Medical: What is Telemedicine? -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Resources and Links Pain Revolution: Tools for understanding pain science and how it can help The New York Times: If ‘Pain Is an Opinion,’ There Are Ways to Change Your Mind Glamour Magazine: For years, doctors told me I was just being dramatic. It wasn't until my endometriosis almost killed me that I was finally taken seriously -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Endometriosis community. Find your condition community. Music for The Patient Is In courtesy of Blue Dot Sessions.
Read more about Paula Dumas here.Related Articles and Resources: MigraineAgain.com Migraine World Summit The New York Times: New Home for Migraine Sufferers Washington Post: The pandemic is a headache — and for some people, it’s causing migraines -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Migraine communityMusic for The Patient Is In courtesy of Blue Dot Sessions.
More from Denise Fixsen"I have dedicated my life to HS and to helping others who suffer. I have been an HS advocate for 29 years now and for 28 of those years an HS patient advocate for others. I have been to doctors appointments, surgeries, and ER visits with them and helped them navigate insurance issues, get proper treatments etc. I have met, helped and worked with hundreds of HS sufferers. Not only has it been an honor working with so many fabulous warriors, but this entire journey has taught me SO much about this illness above and beyond research. I have worked with and continue to work with researchers, scientists, HS specialists, and other advocates. I have attended several HS medical conferences and seminars. I have enjoyed putting together several successful face-to-face support groups around the United States and have and still do spend countless hours researching up-to-date published medical research studies regarding hidradenitis suppurativa and comorbidities. HS facts and factual awareness is VERY important to me. Due to other illnesses, part of my HS advocate journey came to a halt, at least the physical aspect of it. I continue to be an HS advocate and I do what I can to help other sufferers; it’s now just done via email, online, video, phone, and is one of the main reasons why I created the HS support group Hidradenitis Suppurativa Unique Fun Facts and the organization, HS Connect.I have suffered with HS for 42 years now; it started when I was 8 years old. I've been dealing with severe stage 3 since age 25. For about 21 years of my life, 87% of my body has been touched by hidradenitis. I have been through everything imaginable with this, including all the mistakes that go along with this illness. I have also had several invasive wide excision surgeries, which I am still undergoing to date. I am an open book when it comes to my HS and I understand your pain as well as the mental and emotional toll this can take on you. Please feel free to ask me any questions about anything HS related or my personal HS case."Related Articles and Videos The New York Times: Patient Advocates Help Navigate Healthcare HBO: Patient Advocates Can Help Save You Money and Your Life HS Connect Awareness Video: "We are HS Warriors"! -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the HS Community on StuffThatWorks Music for The Patient Is In courtesy of Blue Dot Sessions.
Related Articles: The New York Times: Let the Mind Help Tame an Irritable Bowel Washington Post: Exploring the Mind’s Power over the Body -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to Ulcerative Colitis community Contribute to the Primary Sclerosing Cholangitis community Music for The Patient Is In courtesy of Blue Dot Sessions.
Related Articles: Yale Medicine: Ventilators and COVID-10: What You Need to Know Washington Post: First, Coronavirus Infections Increased. Then, Hospitalizations. Now, Deaths Are on the Rise The Atlantic: Long-Haulers Are Redefining COVID-19 ABC News: Long-haul COVID-19 patients will need special treatment and extra support, according to new guide for GPs Healthline: From Back Pain to Coughing, Life with Long-Haul COVID-19 -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data and learn how COVID-19 affects those of us with preexisting conditions. By sharing information about the impact of the coronavirus pandemic on your daily life, you can play a major role in helping advance research.Contribute to the Research(Everyone can contribute, even if you do not have the virus.)Music for The Patient Is In courtesy of Blue Dot Sessions.
More from Maya Wolff: Maya's Instagram account where she has been documenting her struggle with Long Haul COVID: Maya's website More on Long Haul COVID-19:Body Politic's COVID-19 Support GroupArticles: The Atlantic: Long-Haulers Are Redefining COVID-19 ABC News: Long-haul COVID-19 patients will need special treatment and extra support, according to new guide for GPs Healthline: From Back Pain to Coughing, Life with Long-Haul COVID-19 -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data and learn how COVID-19 affects those of us with preexisting conditions. By sharing information about the impact of the coronavirus pandemic on your daily life, you can play a major role in helping advance research.Contribute to the Research(Everyone can contribute, even if you do not have the virus.)Music for The Patient Is In courtesy of Blue Dot Sessions.
Erdely works at Ctrl M Health as head of content. It's a new platform and app which offers strategies for those who suffer from headache and migraine. In the past she was a journalist, focused on long-form narrative writing, especially about crime, health and social issues.Related Articles and Resources: The New York Times: New Medications for Migraine The American Migraine Association Migraine Again -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Migraine communityMusic for The Patient Is In courtesy of Blue Dot Sessions.