Wait, How Do You Spell That? A Rare Disease Podcast Titelbild

Wait, How Do You Spell That? A Rare Disease Podcast

Wait, How Do You Spell That? A Rare Disease Podcast

Von: Patient Worthy
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 Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.Copyright 2023 All rights reserved. Hygiene & gesundes Leben
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  • Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney Cancer

    Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney Cancer
    Jan 23 2026
    This podcast episode is sponsored by AVEO Oncology. The product information in this podcast is intended only for US residents. This episode features a real patient and their care partner, highlighting their experiences with a treatment option for advanced kidney cancer. Please note that the patient’s experience is their own and individual results may vary. This podcast is not intended as medical advice. Only a doctor can decide what medications may be appropriate for you. The patient and the caregiver were paid for their time and expenses. I’m honored to welcome Scott and Katie to the program. Scott’s journey began in July 2021, when he started experiencing symptoms that ultimately led to a diagnosis of renal cell carcinoma, resulting in the removal of his right kidney. At first, no additional treatments were needed. But in January 2023, after a biopsy of a lesion in his lung, Scott learned that his cancer had returned as stage IV metastatic renal cell carcinoma. Today, we’re joined by Scott and his wife Katie, who share their journey with renal cell carcinoma – the challenges they’ve faced, the lessons they’ve learned, and the support they’ve discovered along the way. Their story is not only about facing a difficult diagnosis, but also about the strength of partnership, perseverance, and hope. Through their experience, Scott and Katie remind us that no one has to face kidney cancer alone—there’s a community of understanding and shared strength every step of the way. Whether you’re a patient, a care partner, or simply someone seeking hope and information, we believe you’ll find inspiration and connection in Scott and Katie’s story. Important Safety Information: Before taking FOTIVDA, tell your healthcare provider about all your medical conditions including, if you have high blood pressure, a history of heart failure, a history of blood clots in your veins or arteries (including stroke, heart attack, or change in vision), bleeding problems, thyroid problems, , liver problems, an unhealed wound, if you plan to have surgery or have had recent surgery, or are allergic to FD&C No. 5 (tartrazine) or aspirin. Tell your healthcare provider if you are pregnant or planning to be. FOTIVDA can harm your unborn baby. If you are able to become pregnant: -Your healthcare provider should do a pregnancy test before you start treatment. -Use effective birth control (contraception) during treatment and for 1 month after your last dose. -Talk to your healthcare provider about birth control methods that may be right for you. -Tell your healthcare provider right away if you become pregnant or think you might be pregnant. -Do not breastfeed during treatment and for 1 month after your last dose of FOTIVDA. Tell your healthcare provider about all the medicine you take and any new medicine. Taking FOTIVDA with certain other medicines may affect how FOTIVDA works. FOTIVDA may cause serious side effects, including: High blood pressure (hypertension). High blood pressure may be severe, including a sudden, severe increase in your blood pressure (hypertensive crisis) that can lead to death. You should check your blood pressure regularly and tell your healthcare provider if you have increased blood pressure or experience confusion, headaches, dizziness, chest pain, or shortness of breath.Heart failure. Heart failure may be serious and sometimes lead to death. Your healthcare provider should check for symptoms of heart failure regularly, such as shortness of breath or swelling of your ankles.Heart attack and blood clots in your veins or arteries. Blood clots may be serious and sometimes lead to death. Tell your healthcare provider or get emergency medical help right away if you have, new chest pain or pressure, numbness or weakness on one side of your body, pain in your arms, back, neck or jaw, trouble talking, shortness of breath, sudden severe headache, vision changes, swelling in the arms or legsBleeding problems. Bleeding may be serious and sometimes lead to death. Report or get medical help right away if you have, unusual bleeding from the gums, red or black stools (looks like tar), menstrual bleeding or vaginal bleeding that is heavier than normal, bruises that happen without a known cause or get larger, headaches, feeling dizzy or weak, bleeding that is severe or you cannot control, coughing up blood or blood clots, pink or brown urine, vomiting blood or your vomit looks like “coffee grounds,” unexpected pain, swelling, or joint pain Protein in your urine. Your healthcare provider should check your urine for protein before and during treatment.Tear (perforation) in your stomach or intestines or an abnormal connection between two or more body parts(fistula). Get medical help right away if you experience tenderness or pain in your stomach-area (abdomen) that is severe and does not go away.Thyroid gland problems. Your healthcare provider should do ...
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    33 Min.
  • Focus on the Rising with Lisa Batista

    Focus on the Rising with Lisa Batista
    Aug 30 2025

    On today’s episode of ‘Wait, How Do You Spell That? A Rare Disease podcast brought to you by Patient Worthy. We are thrilled to share with you a story that is as powerful as it is inspiring. Our guest today is Lisa Batista, author of the newly released memoir, "Falling: A Journey of Strength, Survival and Rising," which is now available on Amazon, Barnes & Noble, and through her website, labatista.com. Lisa grew up in Brooklyn, New York, where she navigated the challenges of a walking world while living with Spinal Muscular Atrophy, or SMA. SMA is a rare, genetic disorder that is categorized as weakness and disintegration of muscles due to the loss of neurons in the spinal cord that affects the control of muscle moment and gradually causes increased weakness and loss of muscle function. In her book, Lisa shares her extraordinary journey—one marked not only by the physical realities of SMA, but also by the misunderstandings she faced from those around her. Often dismissed or accused of laziness, Lisa endured a life shaped by both her diagnosis and the abuse and misfortune that came with not being believed. Despite her muscles growing weaker, Lisa found a path to strength and survival, ultimately rising above the obstacles she faced. Today, we’ll dive into Lisa’s story—her struggles, her resilience, and what she hopes readers will take away from her memoir. So, sit back, get comfortable, and join us for a conversation about courage, perseverance, and the power of being seen and heard.

    To find your copy of Lisa's book:

    Amazon - Amazon.com : falling a journey of strength

    Barnes & Noble - falling: the journey of strength, survival and rising | Barnes & Noble®

    Lisa's Website - Falling - A Journey of Strength, Survival and Rising

    To learn more about Patient Worthy and how you can be a guest on Wait, How Do You Spell That? please visit our website at PatientWorthy.com

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    53 Min.
  • Navigating the Patient's Journey featuring Brenda Snow

    Navigating the Patient's Journey featuring Brenda Snow
    Apr 22 2025

    Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to Navigating the Patient's Journey'. We discuss Brenda's own journey with Multiple Sclerosis and how she has turned it into a career and guidebook for others facing chronic diagnoses.

    You can find Brenda's book now at Amazon.com or by going here: Amazon.com : brenda snow book diagnosed

    And to watch the full interview with Brenda, please visit our YouTube channel here: Wait, How Do You Spell That? - "Diagnosed: The Essential Guide to Navigating the Patient Journey"
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    58 Min.
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