Herding Hope: Zebra and TGCT Talk
Herding Hope is a podcast about finding connection, courage, and community in the world of TGCT and rare diseases. Hosted by Sydney and Virginia, each episode explores shared experiences that unite rare disease patients alongside unique journeys. Through honest conversations with patients, clinicians, and advocates, the podcast shines a light on living with TGCT and the hope that grows when stories are shared. Created by TGCT Support, it is a place for learning, listening, and lifting each other up.
Episodes
Episode 21: Andrea
Andrea is a patient living with diffuse TGCT of the knee in Canada and her journey has taken some unexpected turns.After being diagnosed several years ago by an orthopedic and sports medicine surgeon, Andrea faced a recurrence after barely healing from her last surgery. She was preparing for yet another extensive surgery and radiation when she connected with Sydney Stern of TGCT Support. That intr
Episode 20: Erin C
After more than a decade living with diffuse TGCT of the knee, Erin C has learned that the journey is about far more than a diagnosis. From seeing numerous specialists and navigating different opinions to finding providers she trusts, Erin shares the challenges of advocating for herself through a long and complicated medical journey.But her story isn’t defined by TGCT. Erin C talks about the famil
Episode 19: Serena
For Serena, a TGCT diagnosis came with more questions than answers. Diagnosed with TGCT and undergoing surgery just 1 year ago, she shares what it has been like navigating the unexpected challenges of recovery and finding her way back to strength and balance.As a patient from Germany, Serena opens up about her experience with TGCT, the physical and emotional realities of recovery, and the patience
Episode 18: Amy
Amy, a patient with diffuse hip TGCT, shares her experience navigating surgery and unexpectedly waking up with a hip replacement. As a young patient in her 20s, she faced difficult decisions about treatment and joint replacement while also thinking about growing her family. Now, with her daughter by her side, Amy reflects on how TGCT and her treatment journey continue to impact her life, mobility,
Episode 17: Kelly and Joe
TGCT is a family journey. In this episode, Kelly and her husband Joe pull back the curtain on life with TGCT of the knee. From diagnosis to treatment and everything in between, they share what it's really like to navigate the disease together, offering candid stories, practical advice, and plenty of inspiration for patients, caregivers, and loved ones alike.
Episode 16: Vance
Vance knows firsthand what it means to face TGCT and keep moving forward. Living with diffuse TGCT in his knee, he has become a powerful advocate for himself. In this podcast, he shares his journey, hard-earned wisdom, and practical advice for navigating diagnosis, treatment decisions, and life with TGCT. His story is a reminder that while TGCT can be challenging, patients are stronger than they k
Episode 15: Camille
Camille is a patient living with diffuse TGCT of the knee who has found the power behind her voice. In this episode, Camille shares his personal journey navigating her healthcare and mental health. She speaks about the importance of self advocacy, representation of all patients, and counseling and therapy played a role in her acceptance and journey. Camille’s story offers encouragement to others f
Episode 14: Dr Dale Shepard, MD, PhD Part 2
What does managing TGCT treatment really look like day to day? In this episode, Dr. Dale Shepard, MD, PhD, medical oncologist at Cleveland Clinic, shares practical insights into monitoring and managing side effects during systemic therapy for TGCT. From laboratory blood testing to symptom management strategies, Dr. Shepard explains how he guides patients through treatment while helping them stay i
Episode 13: Dr Dale Shepard, MD, PhD Part 1
Join Dr. Dale Shepard, MD, PhD, medical oncologist at Cleveland Clinic, for an insightful and approachable conversation on navigating systemic therapies for TGCT. In this episode, Dr. Shepard breaks down how he helps patients set realistic expectations around treatment outcomes, side effects, and fertility considerations while empowering them to make informed decisions about their care. Whether yo
Episode 12: Amber
Amber, a UK patient living with diffuse TGCT of the knee, shares her powerful journey from brushing off early symptoms to becoming a fierce advocate for her own care. In this episode, she opens up about the turning points that pushed her to seek answers, challenge assumptions, and take control of her treatment, offering an honest, inspiring look at what it means to find your voice as a patient.
Episode 11: Des
Des is a patient living with diffuse TGCT of the knee who was originally from Singapore before relocating to the United Kingdom. In this episode, Des shares his personal journey navigating two very different healthcare systems and reflects on the lessons he learned along the way. He speaks candidly about the challenges of living with a rare disease, the importance of persistence, representation of
Episode 10: Kelsey
Meet Kelsey, a TGCT warrior from Canada who’s keeping it real about life with a localized TGCT of the knee diagnosis that didn’t go quite as expected. In this episode, she opens up about the shock of diagnosis, the anxiety that followed, and what it’s like when recovery takes longer than expected.Kelsey also shares the practical (and honest!) ways she navigated the ups and downs, including her go-
Episode 9: Arthur
Meet Arthur, a patient living with diffuse TGCT of the knee and a passionate advocate as the Lead Representative of TGCT Support France. In this episode, he shares his journey and dives into the power of self-advocacy, showing how patients can take an active role in their care.From navigating the healthcare system in France to speaking up and being heard, Arthur offers insight, encouragement, and
Episode 8: Patrick
Meet Patrick, a patient living with diffuse TGCT of the elbow, who brings a thoughtful and honest perspective to this episode. He shares how he was diagnosed and how growing awareness around TGCT played a key role in his journey, even helping him choose the right doctor. Patrick has never had surgery which speaks to the evolution of treatment in TGCT.Patrick also opens up about navigating treatmen
Episode 7: RaSheeda
RaSheeda lives with diffuse TGCT of the knee and was diagnosed in the late 2000s, a time when treatment options were limited and the condition was often poorly understood. In 2021, she re-experienced symptoms and it was time to revisit this pesky disease. In this episode, she reflects on how the care landscape has evolved over the years, transforming what once felt like a life defined by recurrenc
Episode 6: Dina
Dina, a young mother in the United Kingdom living with TGCT of the knee, shares her journey navigating a complex referral system and prolonged wait times that delayed access to specialist care. Ultimately seeking treatment abroad, Dina reflects on the emotional, physical, and practical challenges of pursuing timely care outside her residential country and how those experiences continue to shape he
Episode 5: Demi
Demi is used to living life in the fast lane as a professional racecar driver but a diagnosis of localized TGCT in her knee forced her to face an unexpected detour. Navigating pain, uncertainty, and recovery, she pushed through a rapid return to the track, redefining what resilience looks like both on and off the track.In this episode, Demi shares how her diagnosis shifted her perspective, strengt
Episode 4: Alex
Alex is living with diffuse TGCT of the knee. She was diagnosed four years ago and has faced a two-stage surgery and systemic therapy. Refusing to let TGCT define her, Alex has made it her mission to make it “suck less” by pushing forward in her education, reclaiming control over her life, and redefining what resilience looks like in the face of chronic disease.
Episode 3: Woody
Woody is a U.S. military veteran living with diffuse TGCT of the knee, diagnosed 6 years ago. After multiple surgeries and systemic therapies, his military career and family life has been reshaped by TGCT. His story is a powerful reflection on adapting to change while holding on to purpose and strength.
Episode 2: Sydney
Sydney has diffuse TGCT of the hip, with six prior surgeries and one medication. Sydney describes being diagnosed at 17 years old and how it's shaped the last decade of her life. She describes how finding an expert changed her experience and key insights for other patients.
Episode 1: Virginia
Virginia is a patient with diffuse TGCT of the hip. She has had surgery and participated in a clinical trial. Virginia describes her experience with TGCT over the last 8 years and how it impacted her as a young mother and entrepreneur.
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