The Desperate for a Diagnosis Podcast with Laura Nozicka

In this episode of the Desperate for a Diagnosis Podcast, host Laura Nozicka welcomes Matthew Zachary, a 28-year brain cancer survivor, trailblazing patient advocate, and founder of Stupid Cancer. Dubbed “The People’s Voice in Healthcare” by People Magazine, Matthew shares his powerful journey from a misdiagnosed young adult to a leading force in patient advocacy.

During their conversation, Matthew recounts the frustrating and isolating experience of being dismissed by medical professionals before finally receiving a brain cancer diagnosis. He opens up about rejecting chemotherapy against medical advice—thanks to a pivotal conversation with his Uncle Jay—and reflects on the lack of patient-centered care at the time.

Laura and Matthew discuss the evolution of cancer advocacy, how today’s healthcare system still falls short in supporting patients, and the role of technology in reshaping access to information. They also explore the cultural shift around cancer, the potential of early detection innovations, and the systemic changes needed to improve patient outcomes.

Matthew, also known as the Podfather of Healthcare (yes that's P as in Patients), talks about his groundbreaking work in media, including the creation of The Stupid Cancer Show, his acclaimed podcast Out of Patients, and the award-winning documentary The Cancer Mavericks. He also teases a major new initiative in the works—one that could redefine the future of healthcare advocacy.

Join Laura and Matthew for a candid, insightful, and often hilarious conversation that challenges the status quo and champions patient empowerment.

01:48 Introducing Matthew Zachary: The People's Voice inHealthcare

07:45 Matthew's Journey: From Diagnosis to Advocacy

16:45 The Challenges of Young Adult Cancer

20:25 The Decision to Refuse Chemotherapy

27:05 Advancements in Cancer Treatment

27:28 The Evolution of Cancer Drugs

28:02 The Role of Technology in Cancer Care

29:00 Challenges with Online Medical Information

31:28 The Importance of Support Systems

33:06 The Founding of Stupid Cancer

35:28 Improvements in Young Adult Cancer Care

36:48 Cancer as a Chronic Condition

38:42 Future of Cancer Detection and Prevention

43:12 The Podfather of Health Advocacy

45:36 Cancer Mavericks: A Legacy Project

55:20 Final Thoughts and Future Plans

Resources & Mentions:

• Out of Patients, Matthew Zachary’s Podcast, available wherever you get your podcasts
• The Cancer Mavericks Documentary, also wherever you get your podcasts
• Stupid Cancer, Matthew's Not-for-Profit – Learn More
• Connect with Matthew Zachary:LinkedIn

Connect with Laura Nozicka

Email: [email protected]

Website: www.desperateforadiagnosis.com

Facebook⁠⁠⁠⁠

YouTube ⁠⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠

Instagram ⁠⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠

TikTok @desperateforadiagnosis

In this episode of the Desperate for a Diagnosis Podcast, guest Joan DelFattore, Professor Emerita at the University of Delaware and a noted author on healthcare equity for single patients discusses the challenges faced by single individuals in the healthcare system, including biases from medicalprofessionals that can lead to different treatment options based on maritalstatus.

Professor DelFattore shares her personal story of battling stage 4 gallbladder cancer and how physician bias nearly affected her treatment. Our discussion also exploreshow implicit biases in the medical field impact single patients and what steps can be taken to advocate for better, more equitable healthcare.

For more tips for single patients, check out this free resource: Advocacy Tips for Single Patients

00:43 Meet Joan DelFattore: Advocate for Single Patients 02:43 Joan's Battle with Cancer: A Personal Story

09:04 The Bias Against Single Patients in Healthcare

15:44 Research and Advocacy: Changing the Narrative

39:44 Navigating Medical Support as a Single Person

41:52 Challenges Faced by Single Patients44:28 The Importance of Social Support Systems

46:30 Debunking Myths About Marriage and Caregiving

49:44 Personal Stories and Experiences

51:46 Building Reciprocal Relationships

53:22 The Value of Diverse Social Interactions

56:51 Cultural Biases in Social and Medical Contexts

01:05:51 Future Directions and Final Thoughts

Connect with Joan

https://www.facebook.com/groups/CommunityofSinglePeople

Connect with Laura Nozicka

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠: https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠

Instagram ⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠

TikTok @desperateforadiagnosis

Laura Nozicka welcomes Jared Gleaton, a school psychologist, author, and food critic. Just three days before Thanksgiving, Jared shares his inspiring story of losing 176 pounds without trendy diets or drugs, highlighting the psychological and emotional facets of eating. The episode delves into Jared's unique expertise in food psychology, the mental well-being tied to food choices, and how he used mindful eating after a personal tragedy to transform his life. Listeners are introduced to Jared's journey from his childhood and struggles with weight to his critical approach to food as explored in his book, 'A Feast for the Senses: The Psychological Art of Eating Well.' The conversation also touches on broader societal issues, including obesity in children and cultural food practices, and provides practical tips for adopting a balanced, healthy lifestyle.00:00 Introduction to the Podcast and Guest00:46 Jared Gleaton's Background and Expertise02:08 Jared's Personal Transformation Journey03:17 Childhood and Relationship with Food04:40 The Role of Comfort Foods05:47 Understanding Overeating and Moderation09:16 The Impact of Cultural and Environmental Factors15:42 Jared's Aha Moments and Turning Points18:05 The Basics of Weight Loss and Caloric Intake28:06 Psychological Triggers and Eating Habits32:09 Societal and Cultural Influences on Obesity42:12 The Impact of Comments on Self-Perception43:03 Behavioral Tips to Avoid Overeating44:46 Understanding the Psychological Triggers46:42 Personal Experiences with Overeating48:24 Exploring Alternatives to Overeating52:39 The Role of Dietitians and Nutritionists53:26 Jared's Book: A Feast for the Senses54:57 Culinary Adventures and Food Critiques58:49 Psychological Exercises for Food Choices01:11:41 Final Thoughts and Contact Information

Connect with Jared GleatonFacebook: Facebook

Youtube: Jared Gleaton - YouTube

Instagram: Instagram

Website: Transforming Lives Through Food - Jared Gleaton Eats

Book: A Feast for the Senses: The Psychological Art of Eating Well: Gleaton, Jared: 9798990776012: Amazon.com: Books

Connect with Laura Nozicka

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠: https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠

Instagram ⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠

TikTok @desperateforadiagnosis

#FoodPsychology
#MindfulEating
#WeightLossJourney
#EmotionalEating

In this episode of the Desperate for a Diagnosis podcast, host Laura Nozicka interviews Laura Badmaev, a dedicated mother and advocate for children with ultra-rare genetic disorders. Laura Badmaev, founder and chair of the ASXL Rare Research Endowment Foundation, shares her journey and experiences with her son, Alex, who has Bohring-Opitz Syndrome, a rare genetic mutation. They discuss thecomplexities of diagnosing and managing this condition, the importance of genetic testing, and the crucial role of research and community support. Laura also highlights the foundation’s efforts to support families and advanceresearch for ASXL disorders. The episode sheds light on the challenges and resilience of families dealing with rare diseases and the ongoing work to improve their quality of life.

00:00 Introduction to the Podcast and Guest00:16 Laura Badmaev's Background and Achievements 03:39 Understanding ASXL Genetic Mutations

04:03 Alex's Diagnostic Journey

07:34 Challenges and Symptoms of ASXL Disorders

08:44 The Role of Genetic Testing and Research

11:42 Support and Resources for Families 23:20 Complex Care and Palliative Support

37:44 The Foundation's Mission and Future Goals

38:55 Closing Remarks and Contact Information

Contact Laura Badmaev:

laura@arrefoundation. org

www.arrefoundation.org

Connect with Laura Nozicka

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠: https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠

Instagram ⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠

TikTok @desperateforadiagnosis

Dr. Randy Cybulski, sports chiropractor and longtime physician to athletes of all ages, discusses hisunique approach to chiropractic care, and overcoming chronic pain, and pain due to injury. He also provides insight into treating conditions, the importance of questioning medical authority, and the role ofPRP and stem cell therapy in healing.

Dr. Randy also discusses the often-overlooked aspects of injury treatment including inflammation, scar tissue production, and muscle compensation. He sheds lighton how the body handles injury and physical stress, and highlights the unique methods he uses to treat injuries that incorporate this understanding. He has built a practice on finding the root of the pain versus masking pain with drugs or old-thinking physical therapy techniques. He practice offers tailored, targeted modalities and physical therapy to get you back to life! Dr. Randy shares his success stories of treating patients effectively where traditional treatment plans have failed. Connect with Dr. Randy

www.prosportschiro.com

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠ https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠

Instagram - ⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠

TikTok - @desperateforadiagnosis

In this episode of Desperate for a Diagnosis, Dr. Alan Rapoport returns to delve into the concept of medical gaslighting, where patients feel dismissed or misunderstood by healthcare providers. The discussion addresses the evolving complexities of modern medical practice, highlighting constraints faced by doctors, and the importance of patient history for diagnostic accuracy.

The episode explores patient-doctor communication, persistence in seeking diagnoses, and the impact of systemic healthcare issues on patient care. Through personal anecdotes and case studies, the conversation underscores the necessity for thorough evaluations, self-advocacy, and collaboration with healthcare professionals.

00:54 Meet Dr. Alan Rapoport02:11 Dr. Rapoport's Impressive Credentials06:55 Discussing Medical Gaslighting10:45 Challenges in Modern Medical Practice17:55 The Role of AI in Healthcare22:44 Personal Patient Experiences40:04 The Challenges of Doctor-Patient Communication42:13 The Problem with Emergency Room Referrals43:03 Managing Patient Expectations and Time45:34 Preparing for a Doctor's Appointment47:11 The Importance of Asking the Right Questions50:22 Doctors' Research and Collaboration54:14 Switching Doctors: When and Why58:32 The Role of Physician Extenders01:01:26 A Miraculous Diagnosis01:06:50 The Evolution of Medical Diagnostics01:11:34 The Role of AI in Medicine01:13:55 Conclusion and Final Thoughts

Connect with Dr. Rapoport

www.bontriage.com

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠ https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠@desperateforadiagnosis ⁠⁠⁠

Instagram - ⁠⁠ @desperateforadiagnosis ⁠⁠

TikTok - @desperateforadiagnosis

In this compelling episode of the Desperate for a Diagnosis podcast, host Laura Nozicka welcomes Dr. Lauren Strauss, a renowned pediatric and adult headache neurologist, to explore the complexities and advancements in pediatric neurology. The conversation dives deep into diagnosing rare neurological conditions in children, including Spinal Muscular Atrophy (SMA) and Alice in Wonderland Syndrome. Dr. Strauss shares her detective-like approach to diagnosis, new treatment options, and the critical genetic components of conditions like migraines and alternating hemiplegia of childhood.

The episode also addresses the potential link between infantile colic and migraines, emphasizing the importance of building trust with parents and the collaborative effort needed between families and medical professionals. With practical advice for navigating the healthcare system, this episode is essential for parents and anyone involved in pediatric care. 00:34 Meet Dr. Lauren Strauss: Pediatric Neurology Expert

02:37 Challenges in Diagnosing Rare Pediatric Conditions

05:13 The Role of Parents in the Diagnostic Process

07:06 Advancements in Pediatric Neurology

11:23 Alice in Wonderland Syndrome: A Fascinating Condition

15:21 The Importance of Early Diagnosis and Treatment

26:00 Understanding Cognitive Difficulties and Developmental Delays

26:23 Exploring Treatment Options for Children

27:25 The Role of Genetic Testing in Pediatric Care

29:07 Challenges and Advancements in Genetic Testing

32:13 Infantile Colic and Its Potential Link to Migraines

37:46 Navigating the Medical Journey with Rare Conditions

39:17 Building Trust Between Parents and Physicians

44:44 The Importance of Advocacy and Seeking Second Opinions

49:36 Coping with Stress and Mental Health in Medical Journeys

50:21 Conclusion and Final Thoughts

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠ https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠

Instagram - ⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠

TikTok - @desperateforadiagnosis

In this episode of the Desperate for a Diagnosis podcast, I have a heart-to-heart discussion with Dr. Joan Naidorf, an emergency physician, author, and speaker based in Alexandria, Virginia. We delve into the complex and oftenmisunderstood dynamics between patients and physicians, especially when it comes to diagnosing difficult cases. Dr. Naidorf shares her extensiveexperience, offering a unique perspective on how patient interactions can impact both sides of the healthcare system. Topics include medical gaslighting, and how healthcare professionals can improve their approach to how they view patients as well as mitigate biases. Dr. Naidorf talks about her book, “Changing How We Think About Difficult Patients,” and her motivation behind writing it.

Episode Highlights:

- Meeting Dr. Naidorf: An introduction to Dr. Joan Naidorf,her background, and what makes her a unique and insightful guest. [02:30]

- Dr. Naidorf's Book: Discussion about Dr. Naidorf’s book,“Changing How We Think About Difficult Patients,” and her motivation behindwriting it. [10:00]

- Defining Difficult Patients: Dr. Naidorf explains whathealthcare professionals mean by 'difficult patients' and the internal biases that might come into play. [15:45]

- Patient Profiling and Bias: A deep dive into how patientprofiling can affect diagnosis and treatment, and the importance of empathy in healthcare. [25:00]

- Communication Breakdown: The significance of effective communication between doctors and patients, and how misunderstandings can lead to feelings of being 'gaslit.' [30:15]

- Medical Gaslighting: A look at the term 'medicalgaslighting,' its implications, and Dr. Naidorf’s take on the subject. [35:40]

- Emergency Room Challenges: Insight into the specificchallenges faced by emergency room physicians and the triage process. [45:00]

- Women's Health and Bias: Discussion on the differences in diagnosing heart attacks in men vs. women and the biases that come into play.[50:00]

- Patient Expectations: How patients can manage theirexpectations and better communicate their needs to healthcare providers.[57:45]

- Physician's Perspective: Understanding what keepsphysicians up at night and the pressures they face. [1:05:20]

- Key Takeaways: Dr. Naidorf's advice for patients on how to navigate the healthcare system and improve doctor-patient relationships.[1:15:00]

Final Thoughts:

In this episode, we’ve uncovered the often hidden side ofhealthcare, discussing the intricacies of patient-physician interactions. Dr. Naidorf’s wisdom offers valuable insights for both medical professionals and patients, highlighting the importance of empathy, effective communication, and persistence in seeking medical answers.

Connect with Dr. Joan Naidorf:

Website: drjoannaidorf.com

Book: “Changing How We Think About Difficult Patients”available on Amazon and other major retailers.

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠ https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠⁠@desperateforadiagnosis ⁠⁠⁠

Instagram - ⁠⁠ @desperateforadiagnosis ⁠⁠

TikTok - @desperateforadiagnosis

In this episode, join me for an extremely educational conversation with renowned neurologist and headache specialist, Dr. Alan Rapoport, a clinical professor of neurology at UCLA. Dr. Rapoport educates listeners about various headache disorders, including migraines, tension-type headaches, and cluster headaches. Dr. Rapoport discusses the complexities, symptoms, diagnosis, and treatment options for these conditions, highlighting emerging technologies. The discussion also covers Bontriage, a platform co-founded by Dr. Rapoport, which leverages AI for headache diagnosis and improving patient outcomes. Dr. Rapoport walks us through an extremely helpful headache assessment available on his website for patients to chronicle their headache histories to bring to their doctors, therefore maximizing time in the exam room. He also discusses his app, Migraine Mentor, available on app stores. 00:00 Introduction to the Podcast01:16 Meet Dr. Alan Rapoport06:05 Understanding Migraines13:51 Migraine Treatments and Challenges25:26 Exploring Tension-Type Headaches45:28 Cluster Headaches: The Worst Pain Known to Man49:26 Understanding Cluster Headaches54:23 Diagnosing Headaches: Clinical Approach56:09 The Role of Imaging in Headache Diagnosis58:53 Challenges in Headache Diagnosis and Treatment59:09 Sinus Issues and Headaches01:02:46 Introducing Bon Triage and AI in Headache Diagnosis01:24:45 Migraine Mentor App: Tracking and Managing Headaches01:27:21 Conclusion and Final ThoughtsConnect with Dr. Rapoport

www.bontriage.com

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠ https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube ⁠@desperateforadiagnosis ⁠⁠

Instagram - ⁠ @desperateforadiagnosis ⁠

TikTok - @desperateforadiagnosis

In this episode of the Desperate for a Diagnosis podcast, host Laura Nozicka welcomes communications professional Judy, who shares her harrowing journey through misdiagnosis. Judy recounts her development of shingles, initially mistaken for cluster headaches, which eventually led to a painful condition known as postherpetic neuralgia. The discussion covers her myriad symptoms, including blisters, severe pain, and itching, as well as her experiences with various treatments and support groups. Judy's advocacy for the shingles vaccine is highlighted, emphasizing the importance of vaccination to prevent such debilitating conditions.

00:00 Introduction: The Struggle for a Diagnosis

01:13 Meet Judy: A Journey of Misdiagnosis

04:12 The Shingles Diagnosis: A Painful Revelation

06:42 The Battle with Shingles: Symptoms and Misdiagnoses11:05 Hospitalization and Treatment Challenges

13:16 Living with Postherpetic Neuralgia

25:30 Personal Struggles with Shingles

26:04 Pain Management and Treatments

28:04 Exploring Surgical Options

29:45 Advocating for Shingles Vaccination

32:14 Alternative Therapies and Financial Strain

37:15 Support Groups and Community Stories

38:50 The Role of Stress in Shingles

43:44 Writing and Sharing the Experience

47:28 Final Thoughts and Advice

48:33 Conclusion and Podcast Wrap-Up

Connect with Judy

[email protected]

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠ https://www.facebook.com/DesperateForADiagnosisPodcast

YouTube @desperateforadiagnosis ⁠

Instagram -  @desperateforadiagnosis