Episode list

Medical Stories

Bound By Blood

Thu, May 09, 2024
When 69-year-old Salem, Massachusetts resident Robert learned he had a rare blood cancer called blastic plasmacytoid dendritic cell neoplasm (BPDCN), he and his wife, Valerie, found it hard to share the news with their children. But Medical Stories shares how Robert's son, Ross, gave him more help than he expected by volunteering to become a donor for his father. Meanwhile, in Wheaton, Illinois, Medical Stories meets Mike, 70, another patient with a rare form of blood cancer known as Waldenström's macroglobulinemia (WM). Mike was enjoying his retirement when his condition forced him to visit multiple hospitals in a single month and begin chemotherapy. But soon after, he opts for an alternative treatment that puts him on a better path to overcoming his illness. Bound by Blood also features in-depth commentary from renowned experts Andrew A. Lane, MD, PhD, Hematologist Oncologist, Dana-Farber Cancer Institute, Professor, Harvard Medical School, and Shuo Ma, MD, PhD, Professor of Medicine, Hematology-Oncology, Northwestern University Feinberg School of Medicine, Robert H. Lurie Comprehensive Cancer Center.
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Facing the Fray

Thu, May 16, 2024
The CDC says sickle cell disease (SCD) affects approximately 1 in every 365 births among black or African-American infants. For 29-year-old Walter, who lives in Colonial Heights, Virginia, that means living with excruciating pain since he was 3 years old. Medical Stories offers a look at Walter's battle with SCD, during which Walter says his family "poured love into me when I didn't have it to pour for myself." Later, KellyAnne and Kent, a couple from Centennial, Colorado, describe how their lives were changed when their second son, Carter, was exposed to respiratory syncytial virus (RSV) at just 3 months old. KellyAnne and Kent tell Medical Stories about the challenges they faced in raising a child with RSV, such as when Carter's illness spread to another family member. Facing the Fray also features in-depth commentary from renowned experts Wally Smith, MD, Florence Neal Cooper Smith Professor of Sickle Cell Disease, Virginia Commonwealth University, and Eric Simões, MD, Clinical Professor, Pediatrics-Infectious Diseases, UC Denver School of Medicine.
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A Leap of Faith

Thu, May 23, 2024
At first, Karen, 56, didn't realize her back pain was anything serious until she suddenly lost all feeling in her legs and became paralyzed below her waist. That's when she discovered she had diffuse large B-cell lymphoma (DLBCL), one of the most common forms of the disease, according to the Leukemia and Lymphoma Society. But as she tells Medical Stories at her home in Gadsden, Alabama, she decided she had to fight the disease and learn to walk again, using the two loves of her life as motivation: music, and her family. Medical Stories then heads to Montauk, New York, where former court clerk Chuck, 64, shares his experience of battling mantle cell lymphoma (MCL), which the National Library of Medicine identifies as one of the rarest forms of non-Hodgkin's lymphoma. Chuck's worry grew when his MCL returned a few years after the initial treatment appeared to cure the disease. But thanks to the efforts of his wife, Beth, he pursues an alternative method to fight his MCL that gives him a chance to have a cancer-free future. A Leap of Faith also features in-depth commentary from renowned experts Amitkumar Mehta, MD, Hematology Oncologist at The Kirklin Clinic of UAB Hospital, Principal Investigator of Innovative Clinical Trials, UAB, and Peter Martin, MD, Chief, Lymphoma Program at Weill Cornell Medicine.
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Breaking Barriers
Walter, a 70-year-old Tampa resident, has battled acute myeloid leukemia (AML) since 2014. Things appeared to get worse when an initial attempt at chemotherapy failed to prevent the disease from returning. But as we learn in this episode of Medical Stories, Walter's outlook changes when a donor gives him the opportunity to undergo a transplant procedure - and Walter gains a "new family member" in the process. From Tampa, Medical Stories journeys to Lubbock, Texas, where mother Denay is raising her child, Hannah, with Rett syndrome. It's a developmental disorder that mostly affects young girls as toddlers, according to the Rett Syndrome Research Trust. Since she first started showing signs of Rett syndrome 10 years ago, Hannah, now 11, has lost much of her ability to speak and move on her own. But despite these obstacles, Denay and her family tell Medical Stories that their connection with Hannah has only grown stronger as they work together to give her a brighter future. Breaking Barriers also features in-depth commentary from renowned experts David A. Sallman, MD, Myeloid Section Head, Moffitt Cancer Center, Tampa, Florida; Eric Marsh, MD, PhD, Clinical Director, Orphan Disease Center, Professor of Neurology and Pediatrics; and Jeffrey Neul, MD, PhD, Director, Vanderbilt Kennedy Center.
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The Brave Front

Sat, Jun 08, 2024
In "The Brave Front", Medical Stories speaks with two families with children born with x-linked myotubular myopathy (XLMTM or MTM), a rare muscle disorder. In Methuen, Massachusetts, Erin and Mark share how their son, Will, embraced life to the fullest despite the disease. Meanwhile, in Virginia Beach, Marie relates how their family of five dealt with the reality of providing 24/7 medical care to her two sons born with XLMTM, Reid and Paley. United by their love for their children, Erin and Marie later explain how their experiences led them to build a community to support other families affected by the disorder. Later, Medical Stories shifts focus to Pittsburgh, where 33-year-old Cory, a former naval aviator, battles a rare genetic condition called Wilson disease. The National Library of Medicine notes that the disorder can affect individuals in several ways, causing liver disease as well as problems with the nervous system. Cory was devastated when he received his diagnosis, as it meant he had to give up his lifelong passion of flying. But as he started to lose his will to live, he met his future wife, Anna, a physician who helped him cope with the disease. Medical Stories spends time with the couple as they explain how Cory learned to "build a whole new identity" while living with Wilson. "The Brave Front" also features in-depth commentary from renowned experts Michael Lawlor, MD, PhD, CEO, Diverge Translational Science Laboratory, Professor, Medical College of Wisconsin and Michael Schilsky, MD, Director, Center for Excellence for Wilson Disease, Yale School of Medicine.
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Rare Realities

Sat, Jun 15, 2024
Since she was a young girl, Renae has lived with a strange disease that caused symptoms like lesions and hearing loss. But she was unaware of what it was until she was diagnosed with plasminogen deficiency type one (PLGD-1) at the age of 50. Medical Stories catches up with Renae in Grand Rapids, Michigan, as she describes the experience of growing up with a rare disorder that remained a mystery for most of her life. Later, in Needville, Texas, parents Jennifer and Brian are helping their 4-year-old child, Aaron, deal with Smith-Magenis syndrome (SMS), a genetic disorder that can cause autism and issues with speaking and sleeping. The couple recount to Medical Stories what it was like navigating Aaron's challenges associated with the disorder, shedding light on the significant role played by his older sister, Abigail, in his progress. Breaking Barriers also features in-depth commentary from renowned experts: Amy D. Shapiro, MD, Chief Executive Officer and Co-Medical Director of Indiana Hemophilia and Thrombosis Center; Kevin A. Kaplan, MD, FAASM, Pediatric Pulmonologist, Texas Children's Hospital and Lorraine Potocki, MD, FACMG, Director, Smith-Magenis Syndrome Multidisciplinary Clinic, Texas Children's Hospital, joined by Diane E. Treadwell-Deering, MD, Pediatric Psychiatrist, Texas Children's Hospital.
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Diagnosis Delayed
At first, Jeff assumed his fatigue and sore muscles were normal signs of getting older in his thirties, until a test showed he had immunoglobulin A (IgA) nephropathy, a rare kidney disease. Thankfully, Jeff, now 40, was able to lean on his wife, Joy, who helped him adjust his lifestyle to handle his illness. In Stuart, Florida, Medical Stories takes a look at how Jeff and Joy have navigated the challenges of living with a seemingly invisible disease and redefined their relationship in the process. Meanwhile, in Chapel Hill, North Carolina, Medical Stories visits 47-year-old Stacey, who's been living with a neurological disorder called myasthenia gravis (MG) since she was a young girl. As an adult, she's continued to battle symptoms like a lack of muscle control and breathing problems. In "Diagnosis Delayed", Stacey opens up to Medical Stories how she coped with MG as a child, and how her family, including her two sons, David and James, empowered her to manage the disease later in her life. "Diagnosis Delayed" also features in-depth commentary from renowned experts Jai Radhakrishnan, MD, MS, Professor of Medicine, Director, Clinical Services of the Nephrology Division, Columbia University Medical Center, and James Howard, MD, Professor of Neurology, UNC School of Medicine.
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Cells in Crisis

Sat, Jun 29, 2024
In Dowagiac, Michigan, Medical Stories meets with Duane, a 75-year-old husband and father who learned he had a treatable form of bladder cancer. While Duane was shocked by the news, he wasn't alone in facing this battle. Throughout his ordeal, his daughter, Kristen, helped him find the right doctor and the right treatment to manage his cancer. Her support is why despite his diagnosis, Duane said he's "the luckiest guy in the world." Then, Medical Stories travels to Palm Beach, Florida, to focus on the story of Carlos, an Air Force veteran with chronic lymphocytic leukemia (CLL). When Carlos eventually discovered his CLL had progressed to the worst stage of the disease, "you could have sucked the air out of the room," according to his daughter, Elena. But his story didn't end there. Carlos, now 87, told Medical Stories how his family and his doctor helped him find a way forward with an alternative option that allowed him to avoid chemotherapy while still fighting back against his illness. "Cells in Crisis" also features in-depth commentary from renowned experts Peter H. O'Donnell, MD, Associate Professor of Medicine, University of Chicago Medical Center, and Jacqueline C. Barrientos, MD, MS, Chief of Hematologic Malignancies, Director of Oncological Research, Mount Sinai Medical Center of Florida.
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Strength in Struggle
Kaitlyn, 33, learned that her daughter, Judith, had a condition called CDKL5 deficiency disorder (CDD) when she had convulsions shortly after her birth. Along with her epilepsy, Judith, now 11, also has trouble with focusing on faces, moving on her own, and speaking with others. At first, Kaitlyn was overwhelmed with the responsibility of caring for Judith as a new mother. But as she shares with Medical Stories in National Harbor, Maryland, her family helped provide Kaitlyn the strength she needed to support her daughter. Meanwhile, in Sewell, New Jersey, 60-year-old Sandra is living with Pompe disease, a genetic disorder that severely weakens a person's muscles. Because the condition is rare, it took decades before Sandra received a correct diagnosis. Medical Stories sits down with Sandra, who tells us about her journey to get answers to the questions she's had for years - and how even after her diagnosis, she refuses to let the disease "take over my life." Strength in Struggle also features in-depth commentary from renowned experts Elia M. Pestana Knight, MD, FAES, FACNS, Pediatric Epilepsy, Cleveland Clinic Epilepsy Center; Orrin Devinsky, MD, Director, NYU Langone Comprehensive Epilepsy Center; and Barbara K. Burton, MD, Medical Geneticist, Ann and Robert H. Lurie Children's Hospital of Chicago.
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