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.
Episodes
33 minutes ago
33 minutes ago
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 legs
- Bleeding 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 blood tests to check your thyroid gland function before and during your treatment and may prescribe medicine if you develop thyroid gland problems. Risk of wound-healing problems. Wounds may not heal properly during treatment. Tell your healthcare provider if you plan to have surgery before starting or during treatment, including dental surgery. You should stop taking FOTIVDA at least 24 days before planned surgery. Your healthcare provider should tell you when you may start taking FOTIVDA again after surgery.
- Reversible Posterior Leukoencephalopathy Syndrome (RPLS). RPLS is a condition that can happen. You’re your healthcare provider right away if you have headaches, seizures, confusion, blindness or changes in vision, or difficulty thinking.
- Allergic reactions to tartrazine (FD&C Yellow No. 5). FOTIVDA contains a dye called FD&C Yellow No. 5 (tartrazine) that may cause allergic-type reactions, including bronchial asthma, in certain people. This occurs most often in people who also are allergic to aspirin.
Common side effects include tiredness, diarrhea, decreased appetite, nausea, hoarseness, low levels of thyroid hormones, cough, mouth sores, decreased blood levels of salt (sodium) and phosphate, increased levels of lipase in the blood.
Other side effects include vomiting and weakness or lack of energy.
FOTIVDA may cause fertility problems in males and females, which may affect your ability to have a child. Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with FOTIVDA if you have certain side effects.
These are not all the possible side effects of FOTIVDA.
To report SUSPECTED ADVERSE REACTIONS, contact AVEO Pharmaceuticals, Inc. at 1-833-FOTIVDA (1-833-368-4832) or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please see the Patient Information in the full Prescribing Information at fotivda.com
Thank you again for tuning into ‘Wait, How Do You Spell That?’ and for listening to Scott and Katie’s story. No matter where you are on this journey, there’s a caring community here to support you and you are not alone.
Saturday Aug 30, 2025
Saturday 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
Tuesday Apr 22, 2025
Tuesday 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"
Thursday Dec 05, 2024
Thursday Dec 05, 2024
On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the chief scientific officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunology.
Friday Nov 01, 2024
Friday Nov 01, 2024
In this episode of the podcast we speak to Steve Smith, a patient advocate who is living with Pulmonary Arterial Hypertension (PAH), a rare and progressive condition characterized by narrowing of the blood vessels in the heart and lungs. Steve is a college administrator and avid theater participant who uses his PAH story to connect with others, believing that open communication is key to the patient experience.
Hear More About Steve and Other PAH patients: OutnumberPAH.com
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com
Outnumber PAH | Living With Pulmonary Arterial Hypertension
Together we can outnumber PAH. Find resources for living with pulmonary arterial hypertension and learn from the stories of people in the PAH community.
Friday Oct 04, 2024
Friday Oct 04, 2024
In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, research and fundraising.
Connect with Ashley Point: Koolen de-Vries Syndrome Foundation - My Kool Brother - "Davis Out of the Unknown" Documentary - Donate
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com
Friday Aug 30, 2024
Friday Aug 30, 2024
In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story.
Connect with Valen Keefer: Website - Podcast - Facebook - Instagram - X - LinkedIn
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
Wednesday Jul 31, 2024
Wednesday Jul 31, 2024
In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resiliency.
Connect with Keisha Hickson: Website - Instagram - LinkedIn
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
Friday Jul 12, 2024
Friday Jul 12, 2024
This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial.
Connect with the LGS Foundation: Website - Facebook - X (Twitter) - YouTube - Instagram - LinkedIn
Connect with Ovid Therapeutics: Website - LinkedIn - X (Twitter) - Facebook
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
Friday Jun 28, 2024
Friday Jun 28, 2024
In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their cancer stories story as well.
Connect with Brandi: Website - Facebook - Instagram - YouTube - LinkedIn
Check out Survivorship Today to hear the stories of other cancer survivors like Brandi.
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02