Rare Candor

In this episode, the host discusses the deeply personal journey of Jesse, a patient living with Generalized Myasthenia Gravis (gMG). Jesse shares his story of initially training to be a firefighter, only to face unexpected symptoms and a subsequent diagnosis that changed his life. From being in peak physical condition to struggling with daily tasks, Jesse opens up about the emotional rollercoaster, the dark times, and the significant breakthrough of accepting his condition. With the support of therapy, friends, and family, Jesse emphasizes that 'acceptance is not failure,' and highlights the power of connection, empathy, and resilience in navigating life with a rare disease. The episode sheds light on the unpredictability and invisible struggles of living with gMG, aiming to inspire and offer solace to others in similar situations.

Living with vasculitis—particularly GPA, MPA, and EGPA—is a winding journey filled with trial and error, especially when it comes to kidney damage, a silent but deadly threat. This podcast episode emphasizes practical advice from Laure Larkin, a GPA patient with severe kidney damage, and her wife Lynette. They delve into real-life strategies managing kidney health and the importance of the HEAT Kit—a vital resource for emergency medical situations. Expert tips include monitoring symptoms divided into critical (red) and concerning (yellow) zones, and the essential advocacy needed when dealing with uninformed medical specialists. With insights on breakthrough treatments like avacopan (Tavneos) and the realities of quick-onset kidney crises, this episode is packed with expert advice and authentic patient perspectives to empower anyone facing the unpredictable swings of vasculitis.

In this episode of 'Rare Candor,' we shed light on the stark reality that 95% of rare diseases are without treatment. Enter Fasenra (benralizumab)—the newest treatment for those navigating eosinophilic granulomatosis with polyangiitis (EGPA). Sarah, alongside Dr. Jessica Most, dives deep into Fasenra's unique mechanism of unleashing natural killer cells to tackle eosinophils. They discuss the importance of treating patients with respect, arming them with all the facts and data they crave. The duo also navigates through safety concerns, dosing intricacies, and the uphill battle with insurance companies. Pam ends the episode by sharing tips to help your doctor, and insurance, wrap their heads around the unique dosing for EGPA. Bold, unapologetic, and utterly essential for anyone in the rare disease community.

This episode dives deep into the critical topic of second opinions for those battling rare diseases. Emphasizing the often-overlooked value of getting a second—or even third—medical opinion, it compares the practice to seeking multiple quotes for major home repairs. Through a candid conversation with Dr. Samantha Shapiro, a rheumatologist from Johns Hopkins now in private practice doing second opinions, the episode highlights the necessity of expert insights, especially when dealing with complex, rare conditions. The importance of feeling heard, validated, and understood by healthcare providers is stressed, alongside practical tips for securing second opinions, like using platforms such as Second MD and leveraging crowdfunding sources like GoFundMe for financial support. Ultimately, the message is clear: patients deserve comprehensive care and should never settle for mediocre medical advice.

This episode dives into the often overlooked topic of intimacy for people living with rare diseases, chronic conditions, and chronic pain. As the hosts highlight, the surge of issues such as weight gain from medications like prednisone, premature menopause from cyclophosphamide, and caregiver role reversals can all affect one's self-image and intimate life. Featuring guest expert Jessica Szymas, a licensed mental health counselor and certified sex therapist, the discussion covers the importance of understanding stress, managing trauma, and exploring the Wheel of Consent. The conversation offers practical advice, such as recognizing desires, negotiating boundaries, and utilizing techniques like the Three Minute Game to reconnect with your partner. Emphasizing the fierce urgency of reclaiming humanity and connection amidst medical struggles, this episode serves as a raw, candid guide for those who refuse to let their conditions dim their intimate lives.

In this episode of 'Rare Candor,' the author tackles the colossal mess of medication costs, focusing on Pharmacy Benefit Managers (PBMs). Frustration seeps through as the script dissects how PBMs drive up drug prices through lack of transparency and deceptive practices. The author unpacks the Byzantine mechanisms behind list prices and the hidden rebates that enrich everyone but the patient. Through personal anecdotes and policy insights, the discussion highlights the urgent need for legislative change to cap out-of-pocket costs and shift PBMs to a fee-for-service model. It’s a call to rally against a profit-driven system that exploits the sick for corporate gain.

The podcast episode dives into the complex and often overlooked process of drug development, highlighting its impact on rare disease communities. Important information for anyone that takes medications! Hosts explore the decade-long journey from molecule discovery to market release, emphasizing the immense financial and regulatory challenges. Guest Ron Cohen, a seasoned pharmaceutical executive, reveals the billion-dollar investments needed and the high failure rates drugs face. The discussion also uncovers the opaque role of pharmacy benefit managers (PBMs) in escalating drug prices. The episode calls for legislative changes to support orphan drugs and improve price transparency, stressing the importance of patient advocacy and legislative awareness.

This episode of 'Rare Candor' delves deep into the intricate and often frustrating world of obtaining medication for rare diseases through insurance. It highlights the struggles of prior authorization, step therapy, and fail-first policies that patients and their doctors face head-on. Featuring insights from Michele Oshman of BIO and physician Stephen Chetham, the discussion underscores the necessity for patients to be relentless advocates for their health. Alongside the exploration of bureaucratic hurdles, practical advice is given on appeals and leveraging pharmaceutical company resources. The narrative is punctuated by candid stories, emphasizing the importance of persistence and community support in overcoming these systemic barriers.

This episode of 'Rare Candor' highlights the lengthy and painful diagnostic journey, it features personal accounts from Laura and Cara, who endured extensive medical visits, emotional exhaustion, and repetitive dismissals by healthcare providers. Laura shares her battle with myasthenia gravis, including misdiagnoses and the frustration of being treated as if her symptoms were imaginary. Cara describes how despite advocating fiercely for herself, she faced significant delays in getting the necessary treatment for GPA.The episode underscores the resilience, determination, and immense courage required to navigate the healthcare system while living with a rare disease. It offers a beacon of hope and solidarity through shared stories and the importance of advocating for oneself despite the systemic challenges. The episode closes with a reflection of the Serenity Prayer, emphasizing acceptance, courage, and wisdom in the face of ongoing struggles.

In this episode of Rare Candor, we navigate the impact that chronic illness, fatigue and loss of stamina has on daily life, the requisite adjustment to newfound limitations, and the guilt shared between patient and partner. Laura Flanders shares the relentless toll Myasthenia Gravis takes on her energy and stamina and the tough adjustments she must make. The discussion dives into the internal conflict of accepting help. Laura vividly recounts her life-altering experiences, from struggling to mow the lawn to making decisions about her career. Her story is a powerful testament to resilience, highlighting the ongoing adaptation required to navigate an unpredictable and often invisible illness. Ultimately, the episode looks at the struggle for balance and acceptance in a life forever changed by chronic disease while stressing the importance of compassionate self-awareness and support systems.

This episode of 'Rare Candor' delves into the dual nature of Prednisone—a life-saving yet brutally demanding medication often prescribed for rare diseases. The hosts introduce Laure and Lynette, who recount the treatment journey and life today. The episode contrasts Prednisone's harsh impact with the optimism brought by emerging treatments like Tavneos, offering hope for improved quality of life. The candid discussion sheds light on the harsh realities of living with rare diseases and the emotional toll on both patients and caregivers, emphasizing resilience and the constant search for better alternatives. Despite the challenges, there's a strong message of hope and the continuous pursuit of better treatments for a better future for all rare diseases.

This raw and heartfelt episode tackles the daily struggles of living with rare and chronic diseases, offering candid discussions on physical and emotional coping strategies. Personal stories highlight the unpredictability, isolation, and mental toll these conditions take. Personal stories and genuine conversations shed light on how people navigate the tough days, from finding joy in small moments and emphasizing practical tips like engaging in physical activity, emotional expression, and the importance of support networks. Through shared experiences, this episode includes a conversation with Rachel Young, who has vasculitis, as well as impromptu strategies from a support group, offering a look at how people push through their darkest moments, emphasizing strength, fierce determination, and resilience for both patients and their caregivers.

This episode of 'Rare Candor' dives into the art of partnering with healthcare providers, especially relevant for those grappling with rare diseases. Featuring a chat with John Stadler, an MPA patient, the discussion highlights the emotional ups and downs of forming these critical partnerships. The episode underscores the importance of mutual respect, listening, and emotional intelligence in doctors. Also, it presents the HEAT kit as a game-changer for patients, offering practical advice for navigating the healthcare maze. The conversation touches upon historical and gender disparities in medical research, reinforcing the need for patients to be well-prepared advocates for their health.

This episode kicks off 'Rare Candor,' a podcast diving into the raw and unfiltered experiences of living with rare or chronic diseases. Hosts Sarah Jones and Pam Squires share their personal battles, especially Sarah's fight with EGPA (Eosinophilic Granulomatosis with Polyangiitis), and expose the glaring lack of research, persistent medical gaslighting, and the constant struggle within a failing healthcare system. With a foundation of empathy, they aim to smash the loneliness of rare disease sufferers by sharing real stories, healthcare hacks, and policy discussions. Prepare to have candid and empowering conversations that bring a voice to the often overlooked and misunderstood rare disease community. Visit our website Eosinophilic & Rare Disease Cooperative to learn more and follow us on FaceBook and LinkedIn