Podcasts about rare patient voice

Have you ever wondered what it's like to be both the healer and the one in need of healing? Meet Mallory Carlson, an acupuncturist of nearly 12 years who has simultaneously navigated her own 16-year journey with debilitating migraines and women's health issues. Mallory takes us deep into the raw reality of chronic pain, sharing how she's learned to read her body's signals and transform what once required days of recovery into hours. Her story illuminates the profound mental health challenges that come with chronic illness—from the isolation of canceled plans to the guilt of feeling like you're "too much"—and the powerful practice of self-compassion she's developed in response.The conversation turns particularly powerful when Mallory describes her experiences with medical gaslighting and the physical, almost shock-like reaction she had when finally finding a doctor who recognized her condition after 14 years of searching. "It was such a physical experience," she explains, "the act of being seen and finding someone who can take care of you."From this frustration emerged her platform, The Audacious Patient, born from righteous rage at healthcare inequities and dedicated to making complex medical information accessible. As Mallory shifts from hands-on patient care to education and advocacy, she's channeling her personal struggles into a mission that helps others avoid the years of confusion she endured.Whether you're managing chronic illness, supporting someone who is, or simply interested in healthcare advocacy, this episode offers practical wisdom, validation, and a reminder that sometimes our greatest challenges become our greatest gifts to others. As Mallory beautifully summarizes what it means to be part of a chronic illness community: "It's solidarity and just a quiet knowing... we just have to be there for each other."Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

What happens when doctors dismiss your symptoms for years, even as you're coughing up blood? For Amy, this medical gaslighting journey finally ended with a diagnosis of pulmonary arterial hypertension in March 2023, followed by immediate hospitalization and life-altering treatments.Amy's story isn't just about receiving difficult diagnoses – including a rare heart defect, genetic mutation, and eventually breast cancer. It's about her revolutionary decision to reject the limitations others tried to place on her life. When her doctor automatically assumed she would need to quit her beloved career as a hairstylist and apply for disability, Amy pushed back with a simple question: "Why?" This moment transformed her approach to healthcare forever.Throughout our conversation, Amy shares powerful insights about navigating the healthcare system as your own best advocate. "Your doctor is not your friend," she explains, encouraging listeners to approach medical appointments like interviews where you're assessing if this provider deserves to be on your healthcare team. Her practical suggestions – from asking doctors to document refusals in your chart to seeking second opinions without apology – provide a roadmap for anyone struggling to be heard.The emotional impact of chronic illness resonates deeply throughout our discussion. Amy beautifully articulates the complex emotions behind diagnosis tears – not self-pity as many assume, but relief at finally being heard, grief for what's lost, and determination to create a meaningful life despite limitations. Her work with "Know Your Lemons" breast cancer awareness organization and her goals to lower mammogram screening ages show how advocacy can transform personal pain into powerful purpose.Ready to find your voice in a healthcare system that too often silences patients? Listen now and discover why, as Amy reminds us, "Nobody knows your body better than you."Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

Have you ever found yourself scrolling through social media, seeing others with your same diagnosis seemingly thriving while you struggle to get out of bed? That gnawing feeling of "why them and not me?" isn't something we talk about enough in the chronic illness community.The Spoonie Sisters dive deep into the complicated emotions of competition and comparison that silently impact many people with chronic conditions. Hosts Jen Weaver, Andi Byers, Linnea Knisley, and Angelic Ingram share their raw, honest experiences with jealousy, anger, and the overwhelming feelings that come when we measure our journeys against others.Each sister reveals their personal turning point - from Andi's sixteen years of fighting for diagnosis validation while serving in the military to Linnea's realization that social media only shows highlight reels of chronic illness, not the full 24-hour reality. These powerful stories illuminate how comparison steals our joy and delays our healing, while community support transforms our experience.For those newly diagnosed, this episode offers priceless wisdom: focus on your own journey, give yourself grace for small accomplishments, set healthy boundaries, and most importantly, let go of yesterday's struggles to embrace today's possibilities. As Linnea beautifully summarizes, "Compete in kindness instead of competing in suffering." Every win for one person in our community lifts us all.Ready to transform your relationship with comparison and find your place in the chronic illness community? Listen now and remember that your journey isn't meant to look like anyone else's - it's uniquely, powerfully yours.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Steve Lovelace's journey with arachnoiditis demonstrates the remarkable strength of the human spirit when faced with seemingly insurmountable pain. When his neurologist delivered the devastating diagnosis in 2014 with a solemn "I'm sorry," Steve realized his life would never be the same. This rare disease, ranking at the top of the pain scale, forced him to abandon his career as a traveling salesman and reimagine his entire existence.The roots of Steve's condition trace back to 1982, when a horrific accident left him temporarily paralyzed from the waist down with three crushed vertebrae. Though he defied doctors' predictions by walking again, the trauma planted seeds for future suffering. As mobility issues and excruciating pain gradually took over, Steve initially followed the traditional path of pain management through medication. But after years as "a zombie still thrashing in pain," he made the bold decision to quit all medications cold turkey, enduring withdrawal that he describes as worse than his original accident.What makes Steve's story truly extraordinary is his refusal to surrender. He categorizes his days as "good days, bad days, and survival days," strategically using each to maximize his life despite constant pain. On better days, he pushes his physical boundaries through endurance sports, riding his bike with ankle foot orthotics and walking with forearm crutches. He recently completed a 5K and is training for a quarter marathon, demonstrating that limitations exist primarily in our minds.Steve's golden doodle Shelby provides constant companionship, particularly on difficult days when PTSD compounds his physical pain. His journey has evolved into a mission of inspiration as he writes a book about his experiences and pursues motivational speaking. Living by the mantra "Don't say I can't, say I'll try," Steve shows us that true resilience isn't about avoiding suffering but transforming it into purpose.Listen as Steve shares profound insights about family dynamics with chronic illness, the pitfalls of the medical system, and finding meaning beyond diagnosis. His story reminds us that even in our darkest moments, we can choose how we respond to adversity.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

Andrea's inspiring journey from interior design to public health is a testament to the power of personal experience in shaping professional paths. Prompted by her son's asthma diagnosis and the challenges they faced navigating the healthcare system, Andrea became a Certified Health Education Specialist and Asthma Educator. Through her story, we uncover the emotional resilience required to manage a child's chronic illness and the unwavering trust in parental instincts that guided her towards advocating for better asthma education and specialized care.Medicine shaming and the prevalence of misleading health advice online pose significant challenges for those managing chronic conditions like asthma. Andrea shares her candid experiences with unsolicited advice and the pitfalls of miracle cures, highlighting the critical importance of consulting healthcare professionals and relying on accurate, reputable sources. We also reflect on outdated misconceptions about asthma and the necessity for precise diagnoses and treatments, especially considering the pervasive myths from the 1980s that continue to influence public perception.Creating an asthma-friendly home is crucial for effective management of the condition, and Andrea offers practical strategies to achieve this. From reducing allergens with specific cleaning techniques to ensuring family members are prepared for medical emergencies, she provides actionable tips to maintain a healthy environment. We also delve into the importance of balancing asthma management with quality of life, discussing how to enjoy simple pleasures while minimizing health risks. Andrea's insights empower listeners to make informed decisions that positively impact their lives and those of their loved ones.A few reasons you should care about asthma:Asthma is the most common chronic disease among children Asthma is the #1 cause of missed school days (and kids with asthma grow up to be adults with asthma.)10 people in the U.S. die each day from asthma I love the famous statistics quote by Paul Badeur, "Statistics are human beings with the tears wiped off."American Lung Association https://www.lung.org/Asthma and Allergy Foundation of America https://aafa.org/Allergy & Asthma NetworSend us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

How do you pursue your dreams when your body seems to have other plans? For slow travel nomad and empowerment coach Caitlin, the answer lies in adaptation rather than abandonment. With a background in environmental engineering and a life shaped by fibromyalgia and complex mental health challenges, she's crafted a unique approach to entrepreneurship that prioritizes well-being alongside achievement."I got very, very sick because I was trying to keep up with everybody else," Caitlin reflects, describing her experience in business accelerator programs. This pivotal moment taught her that entrepreneurship with chronic illness requires a different framework—one that might actually be healthier for everyone. "Having a chronic illness actually means that you are respecting your limits a little earlier than maybe somebody who's doing that for 20 years and getting really sick."The conversation explores nervous system regulation as a powerful tool for managing chronic pain. Caitlin explains how understanding her body's signals transformed her relationship with pain: "When I was able to look at pain as my body saying slow down or I need something... that reframe honestly even reduced the time that my flares would last." This perspective shift—viewing symptoms as protective messages rather than evidence of a failing body—offers profound healing potential.Perhaps most valuable is Caitlin's wisdom on boundary-setting. As a self-described sensitive introvert, she's learned to stop over-explaining her limitations. "A boundary is what you are going to do for yourself to keep yourself safe," she explains, "recognizing that energy is finite and if I'm setting a boundary, it's the best thing not just for me but for my work, for my relationships."Whether you're managing a chronic condition, feeling burnout from hustle culture, or simply seeking more intentional ways of living, this conversation offers practical wisdom for honoring your body's needs while still pursuing a life of purpose and adventure. Listen and discover how limitations, when embraced with compassion, can become doorways to unexpected possibilities.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

In honor of Epilepsy Awareness Day.What happens when you combine the expertise of a trailblazing dentist with an unwavering commitment to mental health advocacy? Dr. Amee shares her powerful story of living with epilepsy since age eight and how it catalyzed her mission to challenge societal stigma and embrace vulnerability. Her journey from patient to advocate is a beacon of hope for those newly diagnosed, offering insights into balancing a thriving career and personal life while managing an invisible illness. Join us as we uncover the transformative power of sharing one's story and the strength found in authenticity.Navigating the complexities of parenting with a chronic illness presents its own unique challenges. In our heartfelt discussion, Dr. Amee reveals the emotional rollercoaster she experiences, from isolation and depression to building resilience and understanding within her family. She emphasizes the importance of community support and open communication with children, allowing them to be active participants in the journey without feeling like a burden. Through personal anecdotes, we explore the significance of age-appropriate transparency, ensuring that the next generation understands and embraces the intricacies of living with chronic conditions.Embracing vulnerability and fostering a sense of shared humanity are at the heart of our conversation. We celebrate the courage it takes to show up authentically, even in the face of adversity. Through gratitude and support, we delve into the beauty of creating a network that encourages openness and empathy. By highlighting personal stories and the transformative journey from patient to educator, we hope to inspire listeners to find strength in their vulnerabilities and build supportive communities that celebrate genuine connections.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Join us for a deeply moving conversation with Ashley Spalla, as she recounts her extraordinary journey living with Ehlers-Danlos Syndrome and hip dysplasia. From a seemingly benign basketball injury in college, Ashley quickly found herself facing a challenging medical path that culminated in 49 surgeries over a decade. Her story, filled with determination, resilience, and hope, offers valuable insights not just into the challenges of navigating chronic illness, but also the importance of advocacy, community support, and self-empowerment.Ashley passionately discusses how her struggles led her to a fulfilling role as an advocate for others experiencing similar challenges. Discover her work with Miles for Hips and how she is committed to raising awareness and improving the patient experience in the healthcare system. She speaks candidly about her experiences with medical professionals and the crucial lessons she learned along the way, emphasizing the importance of seeking second opinions and being an active participant in one's own healthcare journey.Moreover, the podcast explores Ashley's love for adaptive sports, highlighting how her passion for skiing has brought her joy and a sense of freedom despite her physical limitations. Listeners will find inspiration in Ashley's perspective: that living with chronic illness doesn't mean giving up on your passions – rather, it can lead to discovering new avenues for joy and personal growth.Through her heartfelt story, Ashley invites you to connect, reflect, and perhaps share in the triumphs and trials that accompany living with a chronic illness. It's a conversation that speaks to the core of what it means to overcome adversity and emerge stronger on the other side. Don't miss this uplifting episode filled with wisdom, humor, and hope! Subscribe, share, and connect with us in our communities!Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Struggling with the challenges of invisible disabilities? Join us as Maggie Cavanaugh, a National Certified Counselor living with postural orthostatic tachycardia syndrome (POTS), reveals her transformative journey from an advertising career to becoming a counselor. Diagnosed at just 14, Maggie navigates the complexities of mental health and chronic illness with empathy, sharing her insights on overcoming disparities in income and workplace stigma. Her story unfolds with a heartening look at how the COVID-19 pandemic inspired her to pivot and support those feeling isolated, highlighting the importance of empathy and understanding.Meet Andy, a remarkable advocate living with multiple invisible disabilities, who demonstrates the power of resilience and self-advocacy. Blindness, deafness, and autoimmune diseases have not stopped Andy from championing the necessity of strength-based, solution-focused strategies both personally and professionally. Their wisdom extends to the role of understanding healthcare providers and the critical support of family and partners. Andy's connection with the Spoonie community underscores the importance of collaborative networks, as they share strategies for empowerment and fostering genuine support systems.Maggie and Andy shine a light on self-care and community as cornerstones of managing chronic illness. They explore turning self-criticism into self-compassion, setting boundaries, and embracing empowerment. Their stories remind us of the resilience found in authentic connections and the transformative power of understanding and support. As we express gratitude to the Spoonie community, the episode culminates in a tribute to the strength and inspiration drawn from shared experiences, leaving listeners with a sense of belonging and encouragement to cherish their perseverance.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Chronic illness impacts every aspect of our lives, including the bedroom. In this refreshingly candid conversation, we break down the walls of shame and silence surrounding sexuality when living with chronic conditions.Ali returns from her mountain cabin retreat to share how her diagnosis completely changed her relationship with intimacy—once a proudly sexual person who even won a Thunder Down Under fake orgasm contest (with her mother cheering her on!), years of severe symptoms and medication side effects left her disinterested in physical connection. Only after prioritizing rest and health did she reconnect with that part of herself – a journey many Spoonies can relate to.The discussion expands into how religious upbringings compound these challenges. From Catholic households to Mormon traditions, many of us received messages of fear and shame rather than education about our bodies. Jen's mother joins the conversation, offering fascinating insights into Mormon temple practices, including special garments with symbolic markings and secret names women aren't allowed to speak. Her powerful story of liberation – shouting her temple name from a mountaintop – demonstrates how breaking free from restrictive beliefs can be part of our healing journey.Personal stories range from embarrassing (smuggling a vibrator through Middle Eastern customs) to deeply concerning (the lack of comprehensive sex education in today's schools). We examine how gender expectations shaped our understanding of roles within relationships and how breaking these generational patterns through open, honest conversations can create healthier foundations for our children.Whether you're struggling with reclaiming your sexuality through chronic illness or want to better understand how illness impacts intimacy, this episode offers validation, laughter, and a reminder that your experiences deserve to be acknowledged without shame. Join us for this profoundly human conversation about one of the most natural yet seldom-discussed aspects of the Spoonie experience.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

Ever wondered how fitness can be more inclusive and empowering for everyone? Join us as we dive into a transformative conversation with Keira, the innovative founder of Chaotic Good Fitness, who has redefined personal training for neurodivergent and queer individuals. Keira's journey, marked by personal battles with ADHD and depression, has fueled their empathetic and personalized approach to fitness. Discover how Kira crafts unique fitness plans for those with chronic conditions like RA, fibromyalgia, and POTS, prioritizing collaboration and boosting confidence while challenging the stale norms of traditional fitness.Let's bring a bit of whimsical fun into our fitness journey! Picture this: workout plans laced with nerdy references and inspired by our favorite board games like Mysterium and Clue. We explore how these playful elements foster community and connection, making exercise sessions spark joy beyond the physical. Whether reminiscing about the cultural significance of Mahjong or sharing quirky stories from beloved games, it's all about tailoring workouts to fit personalities and interests, shifting the focus from weight loss to holistic well-being and joy.Staying motivated can be a struggle, especially for those with ADHD. Together with Keira, we tackle the stigmas and societal expectations attached to fitness, advocating for flexibility and creativity in workout routines. We introduce the concept of an "internal bra" for improved posture and share practical tips for maintaining an active lifestyle. As our conversation wraps up, we express heartfelt gratitude for our cherished community of "Spoonies," whose support energizes and inspires us. Join us for this empowering and heartfelt episode as we celebrate the strength in community and the joy of fitness tailored just for you.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

What happens when ordinary deja vu becomes something far more complex? In honor of Epilepsy Awareness Day, join us as we uncover Emma's extraordinary journey with epilepsy, a condition she was unexpectedly diagnosed with at the age of 23. Her story is a testament to resilience as she navigates through the labyrinth of symptoms and misdiagnoses, revealing the often-overlooked intricacies of living with epilepsy. Emma's candid recount of a pivotal episode in Sri Lanka and her subsequent advocacy work offers a compelling look at the need for greater awareness and understanding of neurological conditions.Emma's experiences paint a vivid picture of the emotional terrain that accompanies chronic illness. The gap between personal reality and public perception is stark, where "I'm fine" often masks a complex struggle. This conversation sheds light on the critical need for empathy and a deeper understanding of those living with chronic conditions. By sharing her personal experiences, Emma hopes to bridge the disconnect, offering insights into the hidden battles that many face and the importance of fostering a supportive community.Art becomes a beacon of healing and expression for Emma, transforming her journey with epilepsy into a creative force. Her venture into illustration and storytelling is not only a means of personal acceptance but also a way to connect with others facing similar challenges. Through her work and collaborations like "Beyond the Ordinary," Emma champions resilience and neurodiversity, highlighting the profound impact of creativity as a tool for coping and building community. Tune in to explore how personal struggles can redefine success and lead to a powerful story of growth and empathy.https://linktr.ee/byemmadearlingSend us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

I'm so excited about this collab with Rare Patient Voice! Stacey and her heart for this organization is incredible. Please tune in and hear how you can get involved in rare disease studies, including Fragile X Syndrome!

Uncover the power of advocacy and community in rheumatology as we welcome our empowering guests, Jennifer Weaver and Cheryl Crow. Jennifer, a dedicated patient leader, and Cheryl, an occupational therapist and founder of Arthritis Life, open up about their journeys as Rheum Champions at the ACR Convergence 2024. With a promise of insight and inspiration, we navigate the intricacies of large conferences, including the importance of patient voices at the table and the small yet significant moments that define their experiences.Balancing the realities of healthcare challenges with triumphs, our conversation shifts to the heart of patient advocacy. Dive into the emotional, and at times, hopeful connections formed between patient advocates and medical professionals. Cheryl and Jennifer share personal stories on navigating sleep hygiene, the subtle pressures of defining "normal," and the importance of sensitivity in language. Through these reflections, we emphasize a broader understanding and embrace of diverse health experiences.Explore the intricate world of rheumatology and the complexities of comorbidities like POTS, long COVID, and rheumatoid arthritis. We also shine a light on recent advancements in lupus treatment and managing chronic pain with "positive activity scheduling." Our discussion concludes with an homage to the supportive sisterhood that empowers us, urging listeners to connect with organizations like the Dysautonomia Association and Creaky Joints. As we wrap up, we celebrate the strength found in shared experiences and encourage you to stay engaged for future episodes.Jen: Rheum Champions - The Rheumatology Lab https://www.instagram.com/gracefully_jen/?__pwa=1Welcome to Gracefully Jen | Instagram, Facebook, TikTok | LinktreeCheryl: Rheum Champions - The Rheumatology Labhttps://www.instagram.com/arthritis_life_cheryl/https://thoughtful-experimenter-636.ck.page/1fb879479cSend us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Have you ever felt unheard or dismissed in a doctor's office? Join us as we navigate through the deeply personal health journeys of Isabel and Emily, part of the founding team of Guava Health, who share their compelling stories of battling complex medical challenges and the frustrating experience of not being believed by healthcare professionals. These stories aren't just about struggle—they're the catalyst for innovation at Guava Health, a personal health app designed to change the way we manage our health data. Along with Megan and Jenny, our Spoonie Sisters, we explore how these insights are reshaping healthcare experiences for countless others.Discover how Guava Health is revolutionizing personal health management with its intuitive platform that brings together every aspect of your health data. More than just a tool, it's a powerful ally that helps you communicate effectively with your healthcare providers. From tracking symptoms and medication reminders to integrating fitness and wellness data, Guava ensures that users can present comprehensive health information, enabling more informed and efficient care. With the introduction of GuavaTags, effortless tracking of daily activities like medication intake becomes a reality, marrying the convenience of technology with the necessity of health advocacy.Our conversation also takes a deep dive into the importance of accessibility and community feedback in healthcare technology. Guava Health stands out by offering nearly all its features for free, ensuring that financial barriers don't prevent anyone from taking charge of their health. By actively involving users in the app's development, Guava continually evolves to meet their needs, making your voice a vital part of its journey. Through collaboration, shared insights, and empowering tools, we're not just advocating for better healthcare—we're actively transforming it. Tune in to hear how innovative solutions and personal experiences are paving the way for a more inclusive and effective healthcare landscape.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

In this episode of the Scope of Things, host Deborah Borfitz delivers the latest on an AI-powered trial screening tool that outperforms research staff, a strategy report on ways to boost cancer vaccine work, the continued absence of pregnant women in clinical trials, a program bringing studies directly to people in rural Utah, and efforts to integrate clinical trials into routine patient care in medically underserved areas of Oklahoma. Wes Michael, founder and president of Rare Patient Voice, also joins in to discuss how his company is connecting people undertaking research studies with participants eager to share their insights—and getting paid to do so. News Roundup  AI clinical trial screening tool Research letter in JAMA  Strategy report on cancer vaccines Commentary in Cambridge Prisms: Precision Medicine  Exclusion of pregnant women from trials Article in American Journal of Obstetrics and Gynecology Bringing cancer care and trials to Utah's rural residents Press release on Huntsman Cancer Institute website Integrating clinical research into primary care News on OU Health Sciences website Guest Wes Michael, president and founder of Rare Patient Voice The Scope of Things podcast explores clinical research and its possibilities, promise, and pitfalls. Clinical Research News senior writer, Deborah Borfitz, welcomes guests who are visionaries closest to the topics, but who can still see past their piece of the puzzle. Focusing on game-changing trends and out-of-the-box operational approaches in the clinical research field, the Scope of Things podcast is your no-nonsense, insider's look at clinical research today.

Join us for a heartfelt and enlightening conversation tackling one of women's health's often-overlooked issues: endometriosis. Through the eyes of three women who bravely share their personal narratives, we uncover the complexities around the experiences of living with this painful condition. From the onset of their first menstrual cycles, fraught with discomfort and uncertainties, to the ongoing struggle to have their pain validated by medical professionals, their journeys are filled with resilience and empowerment. Listen as they candidly discuss the challenges of misdiagnosis and the importance of advocating for oneself—a central theme that resonates throughout their experiences. This episode emphasizes the necessity of self-advocacy when navigating the healthcare system, where symptoms are often dismissed as "normal." Each story sheds light on the emotional turmoil faced, creating a powerful narrative around the need for medical professionals to listen and respond adequately.As the conversation shifts toward treatments and the tough decisions surrounding surgeries, including hysterectomies, our guests share invaluable insights into recovery and the bittersweet journey toward finding relief. They reflect on how community and peer support have played crucial roles in their healing processes.This episode is not just about sharing stories; it's about fostering understanding, breaking stigmas, and building a supportive environment for those affected by endometriosis. We invite you to listen, reflect, and engage with us as we ignite discussion on a topic that profoundly impacts countless women. Don't forget to subscribe, share your thoughts, and connect with us on our journey toward awareness!Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Kim, a passionate advocate and mother, shares her incredible journey of adopting two daughters, one of whom faces the challenges of an ultra-rare brain condition known as Linspad syndrome. Through personal trials and triumphs, Kim has emerged as a formidable voice in the advocacy space, particularly with her work at the Child Neurology Foundation. Explore how Kim has become a beacon of hope, leveraging her unique experiences to connect families with crucial resources and create a supportive community, all while emphasizing the importance of clinical trials and the limitations of insurance coverage for breakthrough therapies.The Child Neurology Foundation's extensive network of 25,000 social service organizations is a lifeline for families navigating neurological conditions. Discover the array of tools and resources offered, such as transition of care toolkits and seizure action plans, aimed at providing comprehensive support. Mental health education for caregivers is a critical component, empowering them with strategies to manage the unique challenges they face. By transcending financial barriers and providing essential services like free flights and accommodations for specialist appointments, the foundation demonstrates its unwavering dedication to each family's journey.Family involvement in clinical research plays a pivotal role in shaping effective therapies, and Kim's experience on a parent council for a clinical trial underscores this point. The conversation highlights the evolution of decentralized clinical trials, which bring flexibility and engagement by conducting trials in non-traditional settings. The value of building community connections, especially in rural areas, is also examined. By sharing insights and fostering collaboration across various fields, Kim and the Child Neurology Foundation illuminate the path toward impactful, patient-centered treatments, while emphasizing the importance of reaching out for support when needed.Email: Programs@childneurologyfoundation.orgWebsite: https://www.childneurologyfoundation.org/Fill out an assistance request form to get support:https://www.childneurologyfoundation.org/family-suppoSend us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

In this episode of Unlocked, Skot Waldron and Pam Cusick discuss the significance of Rare Disease Day, the importance of connecting patients with research opportunities, and the role of Rare Patient Voice in advocating for those with rare diseases. They explore how patients can engage in research, share their experiences, and contribute to the development of treatments and services that can improve their lives. The conversation emphasizes the need for awareness and education about rare diseases and encourages listeners to take action on Rare Disease Day. Website: rarepatientvoice.com

What happens when a determined spirit meets a daunting diagnosis? Join us as we hear from Jewel Dukes, who courageously shares her battle with Cushing's disease. Discover the emotional rollercoaster she faced, from the challenges of weight gain, depression, and anxiety to the life-changing brain surgery to remove a tumor from her pituitary gland. Jewel's story is not just about enduring a rare disease; it's about the powerful connection and hope she found within a community that supports and uplifts her.The path to finding support after a rare disease diagnosis is seldom straightforward. In our conversation, we explore Jewel's journey to connect with those who truly understand her struggles, especially on platforms like Facebook. We dive into the dual challenges of Cushing's disease and Lipoedema, shedding light on the pain and limited treatment options due to insurance obstacles. Jewel shares her wisdom on creating a practical toolkit for symptom management and the necessity of self-care, even when life seems overwhelming.As we discuss holistic wellness, the episode also highlights the benefits of alternative therapies such as acupuncture and stretching for recovery and performance. We tackle the financial barriers to accessing these therapies and stress the importance of listening to one's body. Moreover, we underscore the need to support our friends who may be silently struggling, and how businesses like Crafted with TLC provide creative outlets and community support. As we gear up for Rare Disease Day, we celebrate the resilience and solidarity that Jewel and others find in shared experiences.Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/ Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Discover how former Harlem Globetrotters athletic trainer turned business coach, Michael Dickey, unravels his personal journey with ADHD—a revelation sparked by his son's experiences. Despite initial pushbacks from healthcare professionals, Michael sought a diagnosis that ultimately shed light on the struggles he faced throughout his career and life. His story is both enlightening and empowering as we uncover how recognizing and embracing ADHD can transform not just personal lives but also entrepreneurial paths, aligning them with inherent strengths and passions.Join us as we explore the nuanced transition Michael experienced moving from the adrenaline-fueled world of athletic training to a more introspective role of coaching entrepreneurs with ADHD. We discuss the identity shifts faced by those stepping away from dynamic careers due to chronic illness or approaching retirement. Michael shares insights on how to turn these challenges into opportunities, advocating for the importance of self-awareness and leveraging strengths to guide the next generation of athletes and coaches.In this enlightening episode, we dive into understanding one's unique problem-solving style and conquering executive dysfunction using the conative part of the mind. Learn from Michael about the four action modes that define problem-solving approaches and how to embrace your distinct style to boost productivity and avoid burnout. Tune in for practical strategies on organizing tasks by energy levels and finding balance through joy and extracurricular pursuits, ensuring a successful and fulfilling entrepreneurial journey.http://flowstateexecutivecoaching.com/?fbclid=PAZXh0bgNhZW0CMTEAAaaxpxM6C0fWX_wSX6LuaCcmZj9QFmrCRwVJmMruYEh3GlzDq-3VBMiGezU_aem_z4nWkY3upyFzSLakjVdeEAhttp://flowstateexecutivecoaching.com/retreat/https://flowstateexecutivecoaching.trafft.com/booking?t=s&uuid=72adfe0e-0b3f-4d99-8f11-6b80159bbd38Send us a text Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.Let's Get Started - Rare Patient Voice

We've got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He's an incredible leader in the rare disease community and we're excited to have him on BloodStream! We'll also hear from Wes Michael from Rare Patient Voice.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org   Learn more about survey for the bleeding disorder community from Rare Patient Voice at www.rarepatientvoice.com    Check out Corbin Whittington's LinkedIn page   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

From the heart-wrenching journey of a mother's advocacy to the personal battles with chronic illness, Stacey Haynes's story promises to move and inspire you. We sat down with Stacey, a leading voice in the chronic illness community, to explore her transformative path—from her daughter Iris's diagnosis of Crohn's disease at a young age to Stacey's own diagnosis of thyroid cancer. Stacey opens up about how these experiences led her to work with Rare Patient Voice, an organization that connects patients and caregivers with valuable research opportunities. Her story highlights the significance of community support, both online and offline, and underscores the resilience required to navigate ongoing health challenges.As we shift our focus to the complex landscape of medical challenges, Stacey bravely shares her experience with thyroid cancer, from the initial diagnosis to the ongoing recovery process. She reflects on the vital role her empathetic family played during her journey. Stacey also talks about the challenges of managing health transitions like perimenopause, providing a candid look at the medical appointments and adjustments that come with it. This conversation also explores how Rare Patient Voice empowers patients and caregivers by facilitating meaningful connections with medical research, highlighting the importance of authentic patient participation in advancing medical science.In today's digital age, social media has the power to unite and amplify voices, and Stacey's journey demonstrates just that. Through platforms like Instagram and TikTok, she has found a vibrant community that offers solidarity and resources. Stacey also shares insights from Social Sid's advocacy within the HS community, illustrating how relatable content can spark impactful connections. We wrap up with an engaging discussion on the emotional trials parents face when seeking diagnoses for their children, emphasizing the need for determination and trust in one's instincts. Stacey's dedication to amplifying patient voices and building a supportive community is a testament to the transformative power of shared experiences and collective action.Send us a text

Crafting the perfect elevator pitch isn't just for business moguls—it's a vital tool for anyone navigating life with a chronic illness. Imagine being able to communicate the essence of your health journey in just a few sentences. That's exactly what our latest episode explores, featuring remarkable insights from Jen, Ali, Andi, Linnea, and Megan. Ali inspires us with her journey as a personal trainer who did not let juvenile rheumatoid arthritis slow her down. Andi, who is both blind and deaf on one side, reveals the significance of concise, clear communication with healthcare providers. Meanwhile, Megan, a fitness coach with rheumatoid arthritis, shares how she defies limitations to pursue her passion.We tackle the often invisible nature of chronic illnesses and the misconceptions they breed. Through poignant anecdotes and actionable strategies, our guests reveal the power of having a strong, succinct narrative to advocate for oneself. From navigating awkward gym encounters to educating others with grace, our conversation showcases the importance of being prepared with a well-crafted story. We even discuss the merits of using creative tools like business cards to reinforce these messages in everyday interactions.Laughter and resilience take center stage as we discuss how humor can lighten the load of chronic illness. We emphasize self-care through affirmations and the healing power of a supportive community. Sharing personal stories and quotes, we remind listeners that strength and joy can be found within, even amidst life's toughest challenges. By the end of this episode, you'll feel empowered to embrace your journey and equipped with the tools to communicate it effectively, fostering understanding and connection in the process.Send us a text Delivering Happy Mail around the world!We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.Join our mission to send 100,000 cards of support to patients with long-term illnesses.About our organization | Cards2warriors Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

LET'S CELEBRATE TOGETHER...WOW we are being heard and it is because of you. Time to celebrate together. Amazing year for awareness on me YouTube Channel in 2024 and let's make 2025 even stronger. RARE PATIENT VOICE: https://rarepatientvoice.com/rp/thepicklejar CARDS2WARRIORS: https://www.cards2warriors.org ADRENAL CRISIS COMPREHENSIVE GUIDE: www.chronicallfitcanada.com. "E-BOOKS" POPULAR VIDEOS | MUST WATCH

*TRIGGER WARNING* violence, sexual abuse, and suicide Serena's journey is one of extraordinary resilience and transformation. As our guest, she opens up about surviving a traumatic childhood filled with unimaginable challenges, including abuse and life in witness protection. Her unwavering determination to reconnect with her mother amidst adversity is a powerful testament to the strength of familial bonds. Facing the trials of homelessness and addiction, Serena's story sheds light on the critical impact of early trauma and the path to healing through storytelling.Our conversation moves into the delicate process of healing, highlighting how Serena navigated the shadows of depression and anxiety that once loomed over her life. Drawing from her own experiences, she shares how unhealthy coping mechanisms can take root from deep-seated pain and the importance of embracing the mind-body-spirit connection for true recovery. Serena passionately discusses the liberating power of forgiveness and the contagious nature of positivity, urging listeners to create nurturing environments for themselves and their loved ones.We also explore the intricate dynamics of betrayal, transparency, and self-preservation. Serena recounts the courage it took to leave toxic relationships marked by manipulation and abuse, emphasizing the importance of self-care and community support. Her journey underscores the necessity of honest communication within families and the critical decision to prioritize one's well-being. By sharing her insights, Serena provides invaluable encouragement to those walking their own paths to healing, inspiring listeners to seek strength from their communities and embrace vulnerability as a catalyst for personal growth.Author Website: https://serenamastin.com/Business Website: https://pulsemarketingteam.com/Author IG: https://www.instagram.com/heartfeltstories2024/Business IG: https://www.instagram.com/pulse_marketing/Facebook: https://www.facebook.com/PulseMarketingTeamLinkedIn: https://www.linkedin.com/in/serenamastin/ Amazon: amazon.com/author/serenamasSend us a text Delivering Happy Mail around the world!We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.Join our mission to send 100,000 cards of support to patients with long-term illnesses.About our organization | Cards2warriors Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Imagine facing a medical system that dismisses your symptoms and undermines your experiences. Our guest and dedicated advocate for patient empowerment, Anneke, reveals how she tackled this daunting challenge. Her remarkable journey from misdiagnoses such as chronic fatigue syndrome to finally understanding her rare chronic conditions, including adrenal insufficiency, lupus, and Ehlers-Danlos syndrome, exemplifies resilience. Anneke's story is not just about surviving but thriving, and it serves as a beacon of hope for anyone navigating the complexities of the healthcare system. Her book, "Recognize Me," offers a compelling insight into the life of someone living with fluctuating chronic conditions.We explore the nuanced challenges of medical gaslighting and the crucial role of empathetic healthcare providers who genuinely strive to listen and truly understand their patients. Anneke's experiences underscore the importance of self-advocacy and the transformative power of receiving a proper diagnosis and treatment. Her occupational therapy and health research background adds a unique perspective to her advocacy efforts, highlighting the intersection of personal experience and professional insight. The episode sheds light on the struggles many face with being misjudged by healthcare professionals and the ongoing effort to balance health challenges with familial responsibilities.The conversation delves into the human side of healthcare, stressing the significance of effective communication and trust between patients and doctors. We tackle the stigma of being labeled as "drug seekers" and the fears associated with transitioning to new healthcare providers. Anneke shares her encounters with medical practitioners who value collaboration and admit to uncertainties. Her insights remind us that patients should never feel ashamed of their symptoms, and despite chronic illness, a fulfilling life is within reach. This episode is a powerful testament to the resilience of the human spirit and the importance of defining personal happiness amidst health challenges.Welcome page to my website:  https://flyingthroughthewoods.weebly.com/Blog: https://flyingthroughthewoods.weebly.com/flyingthroughthewoodsPodcasts:https://flyingthroughthewoods.weebly.com/podcasts.htmlYouTube:https://www.youtube.com/channel/UCqcKATXhDJF_X05TGW0g3xwRecognise ME:https://www.amazon.com/Recognise-ME-documenting-journey-gaslighting/dp/1739259270?_encoding=UTF8&qid=&sr=Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

What gives you the ICK? Ever been trapped in an empty lobby, only to have someone sit right next to you? You're not alone! Join us as we laugh through the relatable quirks of public spaces that drive us all up the wall, from the orchestra of loud eaters to those who park just a smidge too close for comfort. We'll share some of our tried-and-true strategies for staying sane in these situations and laugh about how our childhood food aversions have hilariously done a 180 into our adult favorites.On a completely different note, let's unwrap some wild strip club tales that promise both hilarity and heart. Picture a club with a pirate ship façade and a duo of the best wings you've ever tasted as we recount stories from behind the bar and the fascinating people we've met along the way. We even take a fun detour into the world of playful stripper names and reveal anecdotes from a documentary project in Tampa that shines a light on this misunderstood industry, complete with some unforgettable interactions.Our adventure wouldn't be complete without a dash of spice from the sex-positive world. Expect amusing stories like a Christmas lingerie gift gone rogue and the joy of bonding over "happy mail" exchanges within our community. We wrap it all up with self-love reminders and a cheeky offer of a sticker for surviving our episodes without needing a bathroom break. So, settle in for a rollercoaster of laughter, insight, and empowerment!Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Transform your approach to anxiety and personal growth with insights from Andi Byers, a decorated Air Force veteran turned holistic wellness practitioner. Andi & Jen dive in on the My Spoonie Sisters Podcast to share their incredible journeys, the hurdles faced in being recognized for achievements, and the vital role setting boundaries plays in managing anxiety. Andi's ventures, like Chronic and Iconic Coaching, are reshaping the chronic illness and wellness community, offering hope and strategies to those navigating similar paths. Together, we explore the strength found in community and the power of self-awareness in professional spaces.Have you ever felt like anxiety had the upper hand during a public speaking engagement or a bustling conference? You're not alone. Jen recounts her own nerve-wracking experience at the American College of Rheumatology conference, where the atmosphere was nothing short of overwhelming. From the embarrassment of visible sweating to the lingering effects that spilled into the next day, managing anxiety is a battle we know all too well. But with grounding techniques, staying hydrated, and unwavering support from loved ones, there's a way to navigate through it. It's about self-care, embracing vulnerability, and sometimes, laughing at the exaggerated worries we concoct in our minds.Social media and chronic illness present their own set of challenges, particularly when it comes to authenticity and health concerns. Our conversation touches on the evolution from seeking external validation to speaking with our own voices, underscoring the importance of prioritizing health, especially for those with compromised immune systems. From potluck food safety to the cleanliness of church communion, we humorously unpack the often-overlooked aspects of hygiene. Join us as we embrace personal growth, self-compassion, and the responsibility of caring for others, all while sharing a few laughs about faith, food safety, and the "five-second rule.Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

What if your lifelong pain was dismissed as mere imagination? Join us as we explore Riane's powerful narrative of self-advocacy and perseverance in the face of medical doubt. As a Hawaii native, Riane offers an intimate look into her life with juvenile rheumatoid arthritis and chronic migraines, shedding light on how these experiences, along with her grandmother's wisdom, have shaped her path in health and advocacy. Her story is a testament to the resilience needed to overcome the emotional and physical hurdles of chronic illness, emphasizing the importance of community support in this journey.Riane's candid recount of navigating the healthcare system during the tumultuous times of the COVID-19 pandemic offers a poignant perspective on the challenges of securing an accurate diagnosis. The episode uncovers the often-dismissive nature of medical professionals towards those with rare conditions, and Riane's persistence in finding a compassionate healthcare team, leading to the discovery of an uncommon autoimmune disease, Ankaculitis. Her journey underscores the critical role of self-advocacy and the collaborative effort required between patient and practitioner to achieve effective care.We then shift focus to Riane's experiences with medication management and alternative treatments, highlighting the nuanced use of cannabis microdosing and Eastern medicine. Discussions range from the drawbacks of traditional pain management methods to the promising benefits of acupuncture and cupping, offering listeners a broadened perspective on personalizing treatment options. As Riane passionately shares her journey, we explore her literary venture, "Blurred Vision," a poetry book inspired by her experiences with trauma, offering a dual narrative of healing from both survivor and perpetrator perspectives. This episode is a heartfelt call to explore and embrace diverse healing paths on one's journey to wellness.https://www.instagram.com/rianescorner?igsh=MW9rdDBwM3NsZ3JseA==Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

What happens when your life takes an unexpected turn, and you're faced with navigating the complexities of a chronic illness far from home? Meet Helen, a determined life coach whose journey through an ankylosing spondylitis diagnosis after battling COVID in her late 20s reshaped her world. Tune in as Helen shares her personal story of overcoming the intense physical challenges and emotional upheaval of losing her active lifestyle, all while finding solace in her family's support. Her inspiring narrative is not just about survival but about embracing transformation and using her experience to empower others.Helen's relocation from the UK to Barcelona added another layer of complexity to her healing journey, but it also became a catalyst for growth. We discuss the intricacies Helen faced in transferring her medical care and maintaining treatment consistency across borders, highlighting the sometimes daunting, yet vital, task of navigating healthcare systems. Mental health emerges as a cornerstone of her journey, with Helen detailing her use of therapy, coaching, and gratitude practices as powerful tools in managing anxiety and fostering resilience. Her insights offer a roadmap for setting clear goals and cultivating a positive mindset, even amidst overwhelming circumstances.The episode concludes with Helen's wisdom on balancing personal health and a thriving coaching practice. She shares how she proactively prevents burnout by assessing her well-being and managing energy givers and takers. Listeners can expect practical tips for self-care and a touching success story illustrating the transformative power of coaching. Helen's heartfelt gratitude and insights provide a rich resource for building resilience and finding fulfillment, no matter the setbacks. Join us for a moving conversation that not only inspires but equips you with the tools to face life's unexpected challenges.Instagram: @helenjonescoachingTikTok: @helenjonescoachingWebsite: www.helenjonescoaching.com Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

After years of enduring chronic pain, Rick Cram transformed his life by embracing resilience. His story of overcoming a high school football injury and multiple surgeries will inspire you to rethink how you approach life's challenges. We promise you'll gain valuable insights from his “Plan to Be Your Best” program, designed to build resilience and find purpose despite setbacks.Rick's journey offers a deep dive into the complexities of chronic pain and the mental fortitude needed to navigate it. As he shares his experiences — from the chaos of mental storms during daily tasks to the therapeutic power of writing — you'll discover practical strategies for maintaining focus and positivity. Through personal anecdotes, like his own knee replacement, Rick reveals how a shift in mindset can turn fear into opportunity, urging you to listen to your internal dialogue and create strategies to manage overwhelming moments.This episode also explores the power of community and connection in fostering resilience. Rick emphasizes the importance of teaming up with those who understand your struggles, transforming pain into strength and compassion. By celebrating small victories and putting your greatest strengths into action, you'll learn how to be your best self, even amidst adversity. Join us as we explore these themes and visit rickcram.com for additional resources to guide your resilience journey.RickCram.comhttps://www.facebook.com/rick.cram.3https://www.instagram.com/rickcram/https://www.linkedin.com/in/rickcram/https://www.youtube.com/RickCram21https://x.com/RickCram#plantobeyourbest Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Discover how you can manage the financial strain of chronic illnesses with insights from Laura and Jamie of Universal Drugstore, who join us for a candid discussion on medication affordability. We begin with Laura's heartfelt account of living with juvenile arthritis and how the exorbitant drug prices in the U.S. compare to more affordable international options. Learn about Universal Drugstore's two-decade commitment to connecting patients with licensed international pharmacies, providing a reliable lifeline for those struggling to keep up with the cost of long-term prescriptions.As safety concerns often arise with international pharmacies, we tackle these head-on with Jamie, Universal Drugstore's in-house pharmacist. With two decades of experience ensuring the safety and quality of medications, Jamie explains their rigorous standards and global sourcing practices to keep patients safe. Plus, we share advancements in drug therapies for autoimmune diseases, providing listeners with the latest options and innovations, including stem cell therapy. You'll hear about my role in making this complex information accessible and understandable for all patients.We then shift our focus to empowering patients beyond medication, highlighting the importance of accurate medical content and community support. Learn about our collaboration with content and analytics experts to ensure consumer-focused information and the vital role of reliable sources like clinical studies. We encourage tapping into national foundations and local societies for support and invite you to share feedback to help us enhance our services. Universal Drugstore remains dedicated to providing affordable and safe medication solutions while fostering a supportive community for those living with chronic conditions.URL for the website is: https://www.universaldrugstore.com/Contact: Email: info@universaldrugstore.comPhone: 1-866-456-2456Instagram: @universaldrugstore Promo code: JENNI2025, for 15% off your next order. Link is: https://www.universaldrugstore.com?promotion_code=JENNI2025Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

What if you could recognize early signs of health deterioration before it turns into a crisis? Join us in a conversation with the inspiring couple, Jeff and Catherine Pearson, as they share their remarkable journey navigating life with hydrocephalus. Jeff, who has managed this condition since birth, and Catherine, his devoted caregiver, reveal their story of resilience through multiple surgeries and health challenges. Learn how their nonprofit, Hydro With Hope, and their online initiative, Invisible Condition University, provide vital resources and support for those affected by invisible conditions.Our discussion takes a deep dive into understanding the critical importance of proactive healthcare and the emotional and financial toll of unexpected medical emergencies. We explore Jeff's experience with sudden brain surgery and the lessons learned about listening to your body and recognizing symptoms early. Catherine shares her invaluable insights as a caregiver, emphasizing the importance of a supportive network. Through personal anecdotes, she illustrates the nuances of differentiating between various types of discomfort and the significance of addressing both physical and emotional needs.We also explore the Pearsons' passion for fostering community and collaboration in healthcare. By integrating Western and alternative medicine, they advocate for a cooperative approach to care. Their creation of "My Hydro Warrior Story" serves as a testament to the power of storytelling and shared experiences in building a strong support system. Their dedication to empowering families with chronic conditions shines through as they share strategies for balancing family life while navigating the complexities of healthcare. Get ready to be inspired by their unwavering commitment to making a difference in the world of invisible conditions.To watch our TV show Invisible Condition:https://watch.e360tv.com/content/sc_29490_16217Invisible Condition broadcasts LIVE every TUESDAY & FRIDAY at 10:00an MT and is available on demandon FB & YouTube immediately after the LIVE broadcast has concluded. Available on the e360tv siteabout a day later.Watch Invisible Condition LIVE on Facebook:https://www.facebook.com/profile.php?id=100091481468419You can watch the show here and chat with us LIVE during the show)Watch Invisible Condition LIVE on YouTube:https://www.youtube.com/@InvisibleCondition/streamsTo be considered as a guest for Invisible Condition, schedule a short discovery call with Jeff:https://api.totalallinonesolutions.com/widget/bookings/invisibleconditiontvTo join our growing community at Invisible Condition University:www.MyFreeGiftFromJeff.comSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

What if your greatest challenges could fuel your passion and shape your life's ambitions? Meet Lauren, a clinical assistant at Boston Children's Hospital, whose journey with Conradi-Hunermann syndrome and nearly 30 orthopedic surgeries has not only defined her path but also her dream of becoming a pediatric orthopedic surgeon. Through her eyes, we gain a profound understanding of the human side of medicine, where patient-centered care and advocacy go hand-in-hand. Lauren candidly shares how her medical journey has inspired her to educate others about rare diseases and offer the same compassionate care she received.Ever felt dismissed by a healthcare professional? You're not alone. We recount a personal experience where lack of empathy from a medical specialist led to a crisis of confidence, underscoring the emotional impact of not feeling heard in healthcare. This is a stark reminder of the need for healthcare providers to truly listen and validate their patients' experiences. Compassion and understanding are crucial, as they can make a world of difference in patient trust and partnership.In a world where patients are more informed than ever, embracing shared decision-making in healthcare is a must. We explore how empowering patients as active participants leads to better outcomes, with strategies like encouraging second opinions and creating accessible resources. Highlighting organizations like Miles for Hips and Beautifully Made Community, we showcase the support available for those with specific medical conditions. It's about fostering resilience, appreciating health, and emphasizing a growth mindset—prioritizing well-being over rigid timelines. Tune in, and let's transform the healthcare experience together.https://www.instagram.com/lauren.schoeller/profilecard/?igsh=MWJrNWxsZXdlMnNkNQ==Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

This episode breaks down real-world market tests and savvy competitive moves! Get actionable strategies for product changes, budget-friendly consumer research, and the power of understanding your audience.And don't forget! You can crush your marketing strategy with just a few minutes a week by signing up for the StrategyCast Newsletter. You'll receive weekly bursts of marketing tips, clips, resources, and a whole lot more. Visit https://strategycast.com/ for more details.==Let's Break It Down==05:17 Research program analyzes data for insights development.08:12 Humira: versatile drug, profitable for AbbVie, biologics.10:41 Focus on clear benefits to drive change.13:12 Assess market needs; ensure prototype satisfies criteria.16:52 Segmenting meals, not people, by occasion.20:39 Your plant probably eats better than you.24:58 McCormick's packaging change caused customer confusion.26:12 People ignore instructions; follow intuitive methods instead.30:53 Monitor competitors closely; adapt strategy cautiously.33:00 Engage directly with customers for market insights.==Where You Can Find Us==Website: https://strategycast.com/Instagram: https://www.instagram.com/strategy_cast/Facebook: https://www.facebook.com/strategycast==Leave a Review==Hey there, StrategyCast fans!If you've found our tips and tricks on marketing strategies helpful in growing your business, we'd be thrilled if you could take a moment to leave us a review on Apple Podcasts. Your feedback not only supports us but also helps others discover how they can elevate their business game!

After grappling with juvenile idiopathic arthritis since she was just 15, our guest Ali shares her transformative journey from denial to empowerment. Allie's story is one of incredible resilience as she navigates the physical challenges of surgeries and isolation, ultimately finding strength and purpose through movement. As a certified personal trainer, Ali now inspires others with similar limitations, offering hope through her personal experiences and highlighting the critical role of community support.We don't shy away from the harsher realities of life with chronic illness, discussing the emotional weight it carries and the impact on social interactions and personal identity. Through stories of surgical recoveries, mobility aids, and the mental toll of chronic conditions, we explore how essential understanding and empathetic friendships can be. Our conversation also touches upon the scrutiny people face in public spaces, especially as they age or navigate parenting challenges, all while finding humor and confidence along the way.Social media emerges as both a challenge and a lifeline, with discussions around criticism and the misrepresentation of those with chronic conditions in the media. Despite this, platforms offer a supportive space for sharing and understanding, as illustrated by personal stories of connection and motivation. We reveal how fitness can be adapted to suit individual needs, turning exercise into a communal experience that fosters new dreams and aspirations despite chronic challenges. Join us for an episode filled with personal insights, candid discussions, and the unyielding spirit of those living with chronic illnesses.Instagram / TikTok / YouTube  @anotherdaywithraWebsite: www.anotherdaywithra.comAli DiGiacomoSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Ever wondered how someone navigates the unique challenges of a thriving career in musical theater while dealing with the daily hurdles of a chronic illness? Chelsey, our inspiring guest, shares her remarkable journey from Vancouver to the American Musical and Dramatic Academy and how she's now making a difference as the Associate Director of Musical Theater at the 92nd Street Y in New York City. Diagnosed with rheumatoid arthritis in 2020, Chelsey didn't let her condition define her; instead, she transformed her journey into a support system for others through her "Immune System Hates Me" podcast and the Rheumatoid Arthritis Warriors support group. Tune in to hear how Chelsey champions the importance of community and support for those living with chronic illnesses.Through candid reflections, Chelsey discusses overcoming self-imposed barriers and avoiding the catastrophic mindset that often accompanies chronic illness. She emphasizes the support she receives from her colleagues and the nurturing environment that allows her to thrive in both teaching and performing. Learn how Chelsey's passion for musical theater extends beyond the stage as she helps young performers build confidence and find their voice in a creative space that welcomes all. From guiding shy kids to become confident performers to creating a sense of belonging, Chelsey's story is a beautiful testament to the power of the arts in personal development.Navigating a career in the performing arts while managing a chronic illness is no small feat, but Chelsey shares invaluable insights and practical advice on how to make it work. Listen as she talks about adapting dance routines, understanding personal limitations, and having backup plans like further education. Get a glimpse into her personal life, including her experiences with new medications and maintaining relationships. With heartwarming anecdotes and genuine moments, Chelsey's episode is a heartfelt reminder that authenticity and relatability are key to building a supportive community. Join us for an episode filled with humor, shared experiences, and the special bond with our "spoonies sisters.Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

It isn't too good to be true. RARE PATIENT VOICE cares and is giving us the VOICE we want for change with adrenal insufficiency. Brooke joins us to share with us more details about how EASY it is to be heard with RARE PATIENT VOICE. You simply register. Takes about 3 minutes. Register here:https://www.rarepatientvoice.com/rp/thepicklejar If you want change. If you want progress. You need to register and give yourself to opportunity to have your voice heard. Again this is open to anyone with a diagnosed illness. All patients deserve to have a voice. Please share this information and link with anyone you know who has an illness/diagnosis and give them the oppotunity to be part of change. This is very important to me so I truly hope you considering join me. INVITE ME ON THE WELLNESS JOURNEY WITH YOU!

Ever wondered how someone can transform adversity into strength? Meet Victoria, a spirited yoga instructor living with lupus, who shares her powerful journey from undiagnosed college student to a wellness advocate in the bustling city of New York. Experience her raw and emotional recount of confronting extreme fatigue, hair loss, and brain fog before finally receiving her life-changing diagnosis. Through her story, you'll understand the critical role her family's support played during her darkest moments and how she found resilience amidst the chaos.Prepare to be moved by Victoria's tale of survival as she opens up about a life-threatening lupus complication that led to emergency open-heart surgery. She takes us through the heart-pounding discovery of an aneurysm and a tear in her ascending aorta, the urgency of the situation, and the heart-wrenching decision to spend a final weekend with her loved ones before the procedure. This narrative serves as an urgent reminder about the importance of listening to our bodies and seeking timely medical attention to avoid fatal outcomes.Discover how Victoria found sanctuary in yoga and turned her passion into a support system for others battling chronic illnesses. From adaptable yoga practices to promoting mindfulness and self-love, she shares practical tips and invaluable resources for fellow lupus warriors. Engage with her heartfelt insights on managing chronic illness, the power of community, and staying positive amidst life's unpredictabilities. Let Victoria's inspiring journey empower you to face your challenges head-on and embrace each day with renewed strength.Website: https://www.victoriagibbsyoga.com/IG: https://www.instagram.com/whatgibbs?igsh=MW5xbnJ1YmFqb2llMA%3D%3D&utm_source=qrYouTube: http://www.youtube.com/@whatgibbsSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $13 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dog Stanley.

What if embracing your vulnerabilities could become your greatest strength? Join us for an enlightening conversation with Jake Mayers, a Lyme coach who has turned his chronic illness journey into a pathway for helping others. From dealing with dyslexia as a child to confronting the harsh realities of a Lyme disease diagnosis at 15, Jake's story is one of resilience and creativity. He shares how he balanced the fatigue and neurological symptoms of his illness with his passions for drumming and filmmaking, and the pivotal shift he made towards prioritizing self-care and rest.Jake emphasizes the crucial role of tuning into your body's signals and trusting your intuition, especially when traditional medical advice falls short. His anecdotes reveal the transformative power of self-advocacy and persistence in seeking the right diagnosis and treatments. We'll highlight practical techniques like mindfulness, tai chi, and qigong to help calm both mind and body, and discuss the emotional challenges of hiding an illness versus the empowerment of sharing your journey. The episode concludes with a powerful discussion on the importance of community support. Jake introduces us to valuable resources like Spoonie Sisters and Cabana, and the concept of "Best Friend Advice" (BFA) to foster self-compassion. Listen as Jake's insights offer practical strategies for managing chronic illness while finding strength in vulnerability and community. Whether you're navigating your own health challenges or supporting someone who is, this episode provides a rich tapestry of advice and inspiration.Instagram: https://www.instagram.com/jakemayerscoaching/Complimentary Consultation: https://calendly.com/jakemayerscoaching/lyme-support-consultationSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

In this Episode, Laurie and Abbey chat with Pam Cusick and discuss the challenges and strategies surrounding neurodiversity in the workplace. Pam shares insights from a recent survey conducted by Rare Patient Voice, which gathers input from neurodivergent individuals regarding their workplace experiences.Resources: Rare Patient Voice Website: https://rarepatientvoice.comLet's Talk Learning Disabilities Website: https://ltldpodcast.comContact info for the podcast: letstalklearningdisabilities@gmail.comE-Diagnostic Learning Website: https://ediagnosticlearning.comSocial:Facebook: https://www.facebook.com/eDiaglearning/X: @diaglearningLinkedIn: https://www.linkedin.com/company/diagnostic-learning-services/Instagram: @diaglearning

Could you imagine enduring years of chronic pain, only to discover it was more than just "growing pains"? Meet Kait, our remarkable guest who shared her compelling journey from a passionate marathon runner to navigating a labyrinth of medical challenges. From femoral acetabular impingement to labral tears, Kait opens up about her painful experiences that began at the young age of 13 and escalated through her college years. In a candid conversation, she recounts her difficult first surgery, marked by complications and a surgeon's lack of empathy, and how self-advocacy led her to a successful second surgery with a more compassionate professional. Kait's story highlights the importance of finding the right healthcare provider and advocating for oneself.Our discussion takes a deeper turn as Kait reveals her struggle with miserable malalignment syndrome, a rare condition that significantly impacted her life. Thanks to the support of online communities and thorough research, she eventually found the right diagnosis and treatment options, ranging from braces and injections to extensive surgeries. Kait speaks about the added complexity of hypermobility and the potential diagnosis of Ehlers-Danlos syndrome (EDS), stressing the importance of understanding one's body and seeking proper medical advice. Her journey underscores the necessity of community support and the role it played in her path to better health.But it's not all about struggles and surgeries. Kait shares how she finds joy amidst adversity, from traveling and enjoying soccer games to the therapeutic benefits of equine therapy. Her love for cooking healthy meals and the simple pleasures of being a morning person brings a refreshing light to the conversation. We explore how equine therapy has aided in her healing and enriched her career in occupational therapy. Kate's experience is a testament to resilience, the power of supportive healthcare, and finding happiness even in the face of life's greatest challenges. Join us for an inspiring episode that reminds us of the incredible strength of the human spirit.https://www.instagram.com/alignedk8?igsh=cTduNXpzcGp2aDI1https://linktr.ee/alignedk8https://podcasts.apple.com/us/podcast/major-pain/id1562947550?i=1000651266944Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

What if a childhood filled with unexplained symptoms could finally find clarity years later? In this emotional and powerful episode, we journey with Jodi as she takes us through the highs and lows of her lupus diagnosis. From the age of four, Jodi's life was a whirlwind of mysterious rashes, fatigue, and pain. It wasn't until she was 13, with the help of the dedicated rheumatology team at SickKids in Toronto, that her family's relentless quest for answers finally bore fruit. Jodi shares how her parents' fierce advocacy and the support of persistent healthcare professionals made all the difference, turning confusion into understanding and hope.In an inspiring discussion, we explore the creation of "Fabulupus," a groundbreaking book written by two young adults with lupus. This crucial resource aims to help young people navigate the complexities of living with chronic health conditions. We delve into the practical advice the book offers on relationships, education, and workplace rights. Jodi and I exchange thoughts on the importance of personal stories in guiding others, and we provide tips for aspiring authors looking to make an impact in the chronic illness community. The chapter underscores the power of support groups and connecting with relevant organizations to foster a sense of belonging and shared experience.Our conversation also highlights strategies for managing lupus day-to-day. Jodi emphasizes the significance of mindfulness, self-care, and building relationships with consistent healthcare providers. From breathing exercises to using practical gadgets like automatic can openers and sit-to-stand desks, we discuss tools that can simplify life with lupus. We wrap up by reflecting on how living with a chronic condition shapes one's perspective, encouraging listeners to embrace their unique journeys with grace and self-compassion. Join us for an episode filled with heartfelt stories, valuable insights, and a celebration of resilience.Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Imagine enduring years of unexplained fatigue, tendonitis, and carpal tunnel, only to find out these symptoms were just the tip of the iceberg. Join us as Stasha shares her enlightening journey to a rheumatoid arthritis diagnosis, revealing the red flags she overlooked and how a rheumatologist finally brought clarity to her persistent health issues. Discover her tips for managing RA, from biologics and physical therapy to lifestyle changes like staying hydrated and incorporating natural anti-inflammatories such as green tea, peppermint, and cannabis. It's a story of self-advocacy and finding the right medical support to lead a healthier life.In another chapter, we recount our recent meetup in Colorado, where self-advocacy and effective travel management took center stage. As part of the Impact Action Council and Rheum Champion Stasha was excited to attend the Rheumatology Research Foundation Investigators meeting. Stasha and I discuss the significance of connecting with caring specialists and the invaluable experiences gained at conferences filled with intelligent and compassionate professionals. You'll hear about the joy of creating and sharing content that resonates with our health journeys. Finally, we emphasize the importance of embracing small victories, like managing household tasks, to improve overall well-being. Join us as we celebrate incremental progress and self-compassion, and learn how to connect with Stasha for ongoing support and insights.http://www.tenaciousme.org/You can find Stasha on Facebook and Instagram @tenaciousinmeSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

How do you turn a life of chronic pain and addiction into one of resilience and inspiration? On this episode of "My Spoonie Sisters," we welcome Andrea Vincent, a beacon of hope in the chronic pain community. Andrea opens up about her journey from high school misdiagnoses to her battles with osteoarthritis, hypermobility syndrome, and fibromyalgia. Her story takes a powerful turn when she discusses her struggle with alcohol as a coping mechanism and her triumphant path to sobriety in 2012. Motivated by the desire to be a better role model for her family, Andrea's relentless spirit led her to create the "Growth, Resilience, and Grit" journal, a transformative tool designed to help others navigate their own health challenges.We delve into the transformative power of self-care and gratitude in managing chronic pain, exploring how simple daily routines can make a significant difference. Andrea shares invaluable insights on the evolution of chronic pain management strategies, emphasizing mindfulness, meditation, and holistic practices such as acupuncture and massage. The heart of our discussion revolves around her innovative chronic pain journal, which empowers individuals to track their symptoms, treatments, and medications, ensuring clear communication with healthcare providers and avoiding the pitfalls of self-medication.The episode culminates with the successful launch of Andrea's chronic pain journal, which has garnered praise from both the community and medical professionals. We also highlight exciting upcoming projects, including a collaboration with the Portland Chronic Pain Project for an art show and plans for digital distribution. Andrea's personal anecdotes, such as her love for coffee and preference for mountain retreats, add a warm, relatable touch to her inspiring story. Don't miss this episode packed with practical tips and heartfelt stories that will leave you feeling empowered and motivated.www.grgmindbody.comFB; Growth, Resilience & Grit - https://www.facebook.com/grgjournalIG: @grgmindbody.comTT:@grgmindbody.comSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Are you curious about how patient participation can revolutionize medical research? Join us as we sit down with Emily, a dedicated bio-enthusiast and biotech professional, to uncover her journey from cell biology student to trailblazer at the biotech startup Immu. Emily shares her mission to make complex scientific concepts approachable, fueled by her passion for CRISPR technology and personal experiences that shaped her career. You'll gain exclusive insights on finding reliable research studies and clinical trials and practical advice on leveraging platforms like clinicaltrials.gov and withpower.com.Navigate the intricate world of patient research consent forms with Emily's expert guidance on ensuring fair compensation and understanding key elements such as incidental findings and data transparency. We also explore the power of patient communities, especially for those using medical devices or participating in research, and how these communities foster a sense of control and empowerment. Listen in to discover how being a part of research can transform patient experiences, offering hope and a profound sense of agency and belonging.https://www.emilyharari.com/https://www.instagram.com/thepatientscientist?igsh=NHgzejRzb2FreHE2Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Have you ever wondered how a small act of kindness can make a colossal difference in someone's life? Join us for an uplifting conversation with Dawn, the inspiring founder of "Cards to Warriors," who transitioned from a radiation therapist to an advocate for patients and caregivers. Dawn shares her heartfelt journey and the touching story behind this incredible initiative that spreads joy and support through "Happy Mail" to those battling illness. Discover the various ways to get involved, from receiving uplifting mail to joining the card crew and sending encouraging messages, and learn why staying connected and spreading positivity is so vital in challenging times.Delve into the inner workings and challenges of the Cards to Warriors program in our second segment. Find out how participants can opt-in monthly, send and receive cards, and even find pen pals to share their journey with. Dawn sheds light on the special "yikes button" for emergencies, ensuring no one is left without a card, and discusses the importance of financial contributions to keep the program running. Hear about the evolution of the program, from its early days as ChronicWarriorsOrg to its current form, and the technical hurdles they've overcome to maintain privacy and security for participants.Finally, we issue an exciting challenge: join the card crew and start spreading joy! Learn about the simple steps to sign up, maintain confidentiality, and create meaningful connections through personalized information. Dawn shares inspiring examples of various groups involved, from pre-med clubs to high schools, and emphasizes the importance of respecting preferences to make the card exchange special for everyone. Listen in to understand how your small act of kindness can foster friendships, strengthen community bonds, and bring immense joy to those who need it most.Cards2Warriors.orgCards2Warriors.org/happy-mail  (direct link to sign up)Cards2Warriors.org/get-involved (to volunteer and send cards)IG: @cards2warriorsFB:  @cards2warriorsSend us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Jill need your support ‼️ I wanted to share this with everyone and ask for your support. As you know I am very passionate about my health, and advocating for adrenal insufficiency. I was recently approached by RARE PATIENT VOICE. RPV brings the gap between patients and researchers. Patients have voice by being giving the opportunity to participate in research. RPV gives you, the patient the opportunity and you can choose if it is right for you. No obligation. No pressure. Your choice. Always. This can be as simple as a survey to clinical trials. It is all up to the individual and many opportunities you get paid up to $125 US/hour. Please join me. Register here:https://www.rarepatientvoice.com/rp/thepicklejar It is pretty amazing and open to anyone with a diagnosed illness. You simply register. Takes about 3 minutes. RPV reaches out if there is an opportunity. You decided if you choose to participate. If you want change. If you want progress. You need to register and give yourself to oppoutniry to have your voice heard. Again this is open to anyone with a diagsnosed illness. ADRENAL INSUFFICIENCY patients desaparetly needed. Only 366 registered in US. Only 18 registered in Candaa Only 44 registered in the UK. All patients deserve to have a voice. Please join me. Register here:https://www.rarepatientvoice.com/rp/thepicklejar Please share this information and link with anyone you know who has an illness/diagnosis and give them the oppotunity to be part of change. This is very important to me so I truly hope you considering join me. Jill ❤️