エピソード

  • Stacey From Rare Patient Voice on Her Path to Advocacy

    Stacey From Rare Patient Voice on Her Path to Advocacy
    2025/07/16
    Stacey is seemingly living the dream. Working as a social media manager and patient advocate for Rare Patient Voice, she balances work with being a wife, mother, dog mom, caregiver, and pursuing her goal of a happy healthy home on the islands of Hawaii. For most people the normal struggles with preparing for your oldest to graduate high school and your youngest to enter middle school are enough. Stacey has taken on those challenges as well as health related twists and turns, not only with herself, but also her daughter. Stacey and her daughter Iris had parallel health crises on the small island that they call home. When her daughter was just 4 days old she had blood in her diapers and that started a journey that ended in an overnight flight to Children's Hospital of Philadelphia (CHOP). She was eventually diagnosed with Crohn’s Disease around her third birthday. This, alongside allergies to dairy, tree nuts, peanuts, and eggs made her growth and development an uphill battle for much of her childhood before current treatments like biologics proved more effective. Before her daughter's diagnosis Stacey had been thinking her fatigue was just the stress of working and raising two kids. That was until the day she found a lump in her neck and was quickly diagnosed with thyroid cancer. Thankfully surgery was quick and successful, but the long term effects of having half of a thyroid continue to this day. These experiences have led Stacey to the position she holds now, working for Rare Patient Voice. They work to connect patients with rare diseases and companies looking to do focus groups and surveys about the lived experience of people with rare and chronic illnesses. This work connecting patients to paid opportunities to share their experiences as well as acting as a patient advocate has allowed Stacey to use her personal experience to create community around the world, centered around health challenges that people often experience in isolation. Use our affiliate link to sign up for Rare Patient Voice at https://rarepatientvoice.com/MajorPainPodcast PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on this website!
    続きを読む 一部表示
    1 時間 5 分
  • Brenda Snow, Author of ‘Diagnosed,’ On Her MS Journey

    Brenda Snow, Author of ‘Diagnosed,’ On Her MS Journey
    2025/07/02
    Brenda Snow was diagnosed with relapsing multiple sclerosis (MS) in the early 1990s, during an era when treatment was minimal and the condition was poorly understood—a time often marked by a 'diagnosis and adios' approach. Like many facing chronic illness, her diagnostic journey was filled with medical gaslighting and doctors refusing to listen. But her journey reveals a deeper truth: one of self-advocacy, strength, and rewriting the narrative of what hope within chronic illness looks like. Brenda went on to lobby for the landmark Kassebaum-Kennedy Bill in 1996, challenging stigma and sparking systemic change. She’s the founder and CEO of Snow Companies, a leading patient engagement agency, and author of Diagnosed: The Essential Guide to Navigating the Patient’s Journey—a compassionate roadmap for anyone facing a life-changing diagnosis. At the time Brenda was diagnosed with relapsing MS, there were no FDA approved treatments. With limited medical guidance, her family became her lifeline, stepping in to support both Brenda and her young daughter. The first symptoms Brenda experienced were vision changes and extreme, overwhelming fatigue as her body felt like concrete. As the disease progressed, she lost sensation in her left foot and leg, making walking increasingly difficult. A few months after diagnosis Brenda lost function from the waist down, utilizing adaptive devices to maintain daily living activities. She was among the first patients to receive treatment for relapsing MS, and by the seventh month after diagnosis, her symptoms began to stabilize. Although neurological deficits—such as optic neuritis, spasticity, tremors and left-sided weakness—persisted, Brenda approached her condition with determination. Brenda learned how to manage the recurring symptoms and reclaim agency over her life. In this episode of the Major Pain Podcast, Brenda Snow shares insights from her book, offering inspiration and practical guidance to those navigating the emotional terrain of diagnosis. Her work serves as both a roadmap and a lifeline—helping patients understand what to expect, how to build a life of purpose, and how to keep moving forward as a patient patient anchored by the thread of hope. Find Brenda's book on her website: https://brendasnow.com/ PlayWatch the episode on YouTube, listen on our website, or on your favorite podcast platform.
    続きを読む 一部表示
    59 分
  • Joan of Heart From Pedal Playhouse on Her Complex Medical Journey

    Joan of Heart From Pedal Playhouse on Her Complex Medical Journey
    2025/06/11
    Joan, or as she is better known on the internet Joan of Heart, is an enthusiastic content creator who is best known for her YouTube channel Pedal Playhouse. There she shares her passion for effect pedals not just by reviewing them, but demonstrating what they are capable of along with a healthy mix of comedic animations to keep the video fun and interesting. Joan actually started her channel in response to her ongoing health issues. She has a unique combination of gastrointestinal issues that have left her struggling with doctors to get a proper diagnosis, debating treatment options and dietary concerns. A silent form of GERD (gastroesophageal reflux disease), that lacks the usual heartburn, has damaged her esophagus over the years leaving her with Barrett’s Esophagus (a stiffening of the lower esophagus due to chronic acid exposure). She also has absent esophageal contractility leading to dysphagia or trouble swallowing. Combine both of those with a hiatal hernia where the stomach slides up through the opening in the diaphragm and she has a potent cocktail of issues that antacids, proton pump inhibitors, and sleeping on a wedge pillow can only partially alleviate. In this episode of the Major Pain Podcast, Joan shares her passion for music, media creation, the National Association of Music Merchants (NAMM), in addition to her story of diagnosis and struggles with both mental health and physical illness. Facing difficulty convincing doctors and preparing for corrective surgery, she tries to share her story to help others who may have the same struggles. She reflects on her personal journey as she tries to live up to her sign off line for her videos, “be the good you wish to see in the world”. Check out Joan of Heart at the Pedal Playhouse! https://www.youtube.com/@PedalPlayhouse PlayWatch the episode on YouTube, listen here on the website, or on your favorite podcast platform.
    続きを読む 一部表示
    1 時間 13 分
  • Art Therapy and Mental Health Care for Chronic Illness Patients

    Art Therapy and Mental Health Care for Chronic Illness Patients
    2025/05/22
    Bonnie is a licensed marriage and family therapist in Washington state as well as a nationally registered and board certified art therapist. As an undergrad in psychology and art, Bonnie knew she wanted to help people but was initially hesitant to take on the graduate school needed to become an art therapist. After years of working with organizations helping connect people with the resources they needed, Bonnie was tired of referring clients to others for help and took the plunge on her own education. After 3-4 years of grad school and 2 more years of post graduate training she was able to provide art therapy services to those in need, with a focus on chronic illness and cancer care. She now works with adults providing art therapy services to help those with chronic conditions process their experience in a new way. Alongside Katie, another therapist working with patients with chronic pain (including the host of this program), Bonnie co-founded Dream Big Wellness. This 501(c)(3) nonprofit organization was dedicated to helping people with chronic pain, chronic illness, and cancer care access art therapy and mental health care services as they navigate the healthcare system. Today, with a team of 7 clinicians and 4 board members, they provide services to Washington state focused in the Seattle area. Through Dream Big Wellness, they provide unique opportunities for patients to express their emotions, struggles, and symptoms using art instead of words. This process can often help find new ways to express hard to convey truths and a new way to think about experiences through different perspectives. In this episode of the Major Pain Podcast we talk with Bonnie about the many benefits of art therapy and mental health care for those dealing with loss, grief, depression, post traumatic stress disorder (PTSD), and anxiety. Chronic illness can be such a large part of a person's lived experience, and art therapy can help escape that sense of isolation. Patients can gain understanding of their own experiences and new ways to communicate them to loved ones and care providers alike. Connect with Dream Big Wellness online at https://www.dreambigwellness.org/ While Dream Big Wellness serves patients within Washington state, there are many great organizations throughout the rest of the US. Arttherapy.org, the Art Therapy Credentials Board (ATCB.org), the American Psychological Association (APA.org), and Psychology Today all provide ways to find the right therapist for you. Podcast editing and write-up by Casey McKenzie. PlayWatch on YouTube or listen on your favorite podcast platform.
    続きを読む 一部表示
    49 分
  • Living with Vascular Ehlers-Danlos Syndrome (VEDS)

    Living with Vascular Ehlers-Danlos Syndrome (VEDS)
    2025/05/07
    Hannah is still trying to live her life as any other 22 year old would, dancing with friends, enjoying the outdoors, and loving the cows on her family farm. She hopes to share this positive view of life with chronic illnesses on her public Instagram page beyond.the.label_0 to help show other young people with challenging diagnosis that joy and a life worth living are still possible. In this episode of the Major Pain podcast, she took a few minutes to talk to us about her journey with vascular Ehlers-Danlos syndrome from a lake near her home in Tennessee. Hannah started life as a perfectly healthy kid playing basketball, softball, cheerleading, and getting into trouble on the farm. Even then she watched her brother struggle with seizures and a difficult road to diagnosis that ended with Chiari malformation and tethered cord syndrome. When she got a concussion at the age of 13 everything seemed to change, and Hannah was also diagnosed with both Chiari and tethered cord, in addition to vascular Ehlers-Danlos syndrome (VEDS). She would later be diagnosed with postural orthostatic tachycardia syndrome (POTS) and is exploring the possibility that she may have mast cell activation syndrome (MCAS). Her doctors narrowed in on the vascular form of EDS when she was 16 and began having pain, fever, and illness with her periods which became unpredictable, either missing months at a time or lasting up to a year of continuous bleeding. After many surgeries to release the Chiari, fuse vertebrae, release the tethered cord, and a difficult decision to have a hysterectomy at age 19 to resolve her constant bleeding, Hannah still would not change a thing. Though she used to wonder why god would do this to her, she now sees the good that can come from perseverance. She talks us through her history with VEDS, tells us about her medications and coping mechanisms, as well as how her chronic illness journey has strengthened her faith. With her long term boyfriend and service dog at her side, Hannah is a resource for other patients going through similar life challenges as she continues to find what her future will bring. PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
    続きを読む 一部表示
    57 分
  • Living with Visual Snow Syndrome

    Living with Visual Snow Syndrome
    2025/04/23
    Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning or cold prickling sensations in her body, and a sense of depersonalization. Overall, this is an overwhelming and debilitating constellation of overstimulating sensory experiences that has drastically changed her life. Willemijn's journey with VSS started about a year ago, but this was not her first unexplained health crisis. Several years before she had woken up with her legs no longer working, precipitating the need for a wheelchair for the next 6 months. Doctors never figured out why this happened, partially because the problem was worked through in physical therapy while Willemijn waited a year to see a specialist. Her visual snow started when she was about 20 weeks pregnant, and when her son was born she experienced a thyroid issue that eventually turned into Hashimoto's disease. Dealing with her day to day symptoms has been frustrating enough, but the lack of answers or support from medical professionals has been deeply discouraging. In this episode of the Major Pain podcast, Willemijn tells us what it's like to live with visual snow syndrome, and talks us through her medical journey so far. The onset of VSS has felt like she's in some kind of glitch where she doesn't feel like herself anymore, which has understandably led to anxiety and depression. Still, Willemijn has hope that researchers will uncover clues about how to treat this mysterious disease in the future. In the meantime, she has learned a great deal by connecting online with others going through similar things. She hopes that by sharing her story she can shed a light on VSS, spreading awareness about the disease itself, and the importance of continued research. Learn more about VSS at the Visual Snow Initiative's website: https://www.visualsnowinitiative.org/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
    続きを読む 一部表示
    48 分
  • Season 5 Premiere! Catching Up With Previous Guests Joey, Colby and Angela

    Season 5 Premiere! Catching Up With Previous Guests Joey, Colby and Angela
    2025/04/09
    Today we are kicking off the fifth season of Major Pain! Jesse reflects on the past year before we jump into three interviews with previous guests, updating us on their health journeys. Joey tells us about a surgery to manage his hidradenitis suppurativa, plus updates on his amazing advocacy work. Check out Joey's original episode here: https://majorpainpodcast.com/living-with-hidradenitis-suppurativa/Sign up for the upcoming HS Brotherhood meet up: https://zoom.us/meeting/register/d1fgOjAoTGOmmJDu9J9J8g#/registration Colby updates us on a new diagnosis, and discusses how past trauma has influenced their decision to undergo elective surgery. Find Colby's original episode here: https://majorpainpodcast.com/managing-somatic-symptom-disorder-inside-a-multitude-of-chronic-illnesses/ Angela tells us how breathing problems led to her diagnosis with pulmonary hypertension.Find Angela's original episode here: https://majorpainpodcast.com/surviving-multiple-chronic-illnesses-surgeries-a-coma-and-being-pronounced-dead-angela-b-brown-feels-blessed-to-be-alive/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
    続きを読む 一部表示
    1 時間 40 分
  • Sarah Fox on the Intersection of Mental Health and Faith

    Sarah Fox on the Intersection of Mental Health and Faith
    2025/03/26
    Since being diagnosed with bipolar 1 disorder, Sarah Fox has made it her mission to break down the stigma surrounding mental health. She is the host of the Rough Edges podcast, which provides tools for mental health education and examines the intersection between faith and mental health. Sarah's faith journey has been an integral part of her bipolar journey, in fact her diagnosis initially triggered a crisis of faith that she has since overcome. In January of 2021, Sarah experienced a severe manic episode. This involved disruptions in her sleep, incoherent thoughts and psychosis, with both auditory and visual hallucinations. Her memories of this time are hazy, but she does remember feeling a powerful sense of euphoria, like she was on top of the world. As this manic episode increased in intensity Sarah became aggressive, at which point her family decided to have her hospitalized. During her three week stay in the hospital Sarah was diagnosed with bipolar disorder, and the severity of her manic episode qualified her as type 1. In this episode of the Major Pain podcast, Sarah discusses how her bipolar diagnosis transformed her life, initially turning her world upside down. Her prior knowledge of bipolar had a negative connotation due to poor representation in popular media, and to be diagnosed with this disease triggered not only a crisis of faith but also an identity crisis. She suddenly had to re-contextualize everything she thought about herself, but the resulting transformation has brought her to a place of stability in both her bipolar journey and her faith. Through her mental health advocacy work she endeavors to spread a message of hope, proving it is possible to thrive with bipolar. Connect with Sarah and check out the Rough Edges podcast at https://www.roughedgespodcast.com/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
    続きを読む 一部表示
    1 時間 3 分