Meg needs your HELP! On this episode of The Desperate For a Diagnosis Podcast, my guest, Meg, expresses her frustration and a lack of acceptance regarding the current state of healthcare. She believes that it is unacceptable for people to be living with high levels of pain in today's society. Meg shares her personal experiences of feeling rushed and unable to fully explain her symptoms to a doctor. Meg expresses a desire for a different approach to diagnosing and treating chronic conditions. Meg talks about the impact of her condition on daily life and the worst parts about not having answers. She discusses her own journey with chronic pain and diagnoses such as chronic pain syndrome, stenosis in the lumbar spine, and arthritis but she still needs answers! Take a listen to her story to learn more about her symptoms and post in the comments if you have any ideas for her. She learned about The Desperate for a Diagnosis Podcast via Inspire.

What is Inspire?

Searching for a diagnosis – or being diagnosed with a health condition – can be overwhelming. Inspire is the largest online community for health. It’s a safe, anonymous space where you can find information and support for over 3,000 conditions. On Inspire, patients and caregivers open up about their conditions, ask questions and share support for their health challenges.

Find your community of support at Inspire.com.Chapters:00:00:00 The Frustrations Of A Diagnostic Journey00:06:14 Medical Conditions Causing Intense Pain And Arthritis Symptoms00:07:34 Treating Chronic Pain With Medication: Changing The Brain's Perception Of Pain00:12:14 Frustration With Medical Examinations And Seeking Alternative Solutions For Pain Relief00:16:28 Doctors' Recommendations For Curvature: Limited Options00:20:51 Struggling To Decipher An Old Document And Seeking Medical Answers00:24:20 Encouraging Active Patient-doctor Relationships To Address Lack Of Trust00:27:45 Patient Feels Rushed And Unheard During Doctor's Appointment00:31:08 Doctor's Surprise And Advice: Seek Credible Sources For Medical Research00:34:08 Struggling With Chronic Pain And Seeking Answers00:38:29 Finding Hope And Relating To Clients00:43:15 Frustrations And Misunderstandings Surrounding Fibromyalgia DiagnosisConnect with LauraEmail: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

Facebook: https://www.facebook.com/DesperateForADiagnosisPodcastLinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

In this episode, I am joined by Dr. Gary Simonds a highly experienced neurosurgeon, and former head of an academic neurosurgery program at Virginia Tech/Carilion Clinic. He is a professor, and teaches regularly at, the Virginia Tech School of Neuroscience and the Virginia Tech Carilion School of Medicine.

Gary has written and spoken widely on the subjects of neuroscience, medical school admissions, humanism, medical socioeconomics, medical ethics, burnout, personal wellness, spirituality, death and dying, and the interface between science and religion. Known for his compassion and sense of humor, he also writes fiction and is an accomplished and entertaining storyteller. He also is the author of "Death's Pale Flag" launched in June 2023. In his medical thriller, brain surgeon Ryan Brenan is haunted by his work and now, he is haunted by ghosts. Is he losing it? Or, could they be real? And if so, why have they chosen to haunt him?

Throughout the conversation, Gary discusses various aspects of the medical system and the challenges doctors face in their profession and even his own "desperate for a diagnosis" journey.

Gary shares his perspective on the complexities of the medical system, acknowledging that it can be difficult for outsiders to understand. He also highlights the toll that being a doctor can take on personal life and family commitments, particularly when being on call or dealing with traumatic cases.

The conversation delves into the importance of listening to patients and understanding their experiences. We also discuss instances where patients have felt dismissed or unheard by doctors, emphasizing the need for empathy and thorough investigation in order to provide accurate diagnoses. Gary also touches on his interest in exploring the intersection between science and spirituality.

"Death's Pale Flag" is now available on most on-line sites and many local bookstores! You can find Gary's book at IndieBound, Amazon, Barnes and Nobles.

Key Takeaways:

1. Emphasize the importance of being honest and upfront with patients in medicine

2. Acknowledge that there are times when doctors don't have all the answers

3. Highlight the need to try different approaches and specialists to find a solution

4. Stress the importance of never dismissing or belittling patients' concerns

5. Mention the dedication of the book to the author's wife and patients, showing respect for their experiences with neurological disease and injury.

Chapters:

00:03:29 Reflecting On Being A Patient: Impatience And Relapses

00:07:19 The Importance Of Recognizing Multiple Patients In Medicine

00:11:30 The God Complex Of Physicians: Stereotypes And Opinions

00:13:27 The Struggles And Pressures Faced By Physicians

00:15:22 The Challenges Of Being A Surgeon And Balancing Personal Life

00:19:15 Seeking Approval For Medical Treatment

00:20:16 The Challenging Journey To Medical School: Idealism And Dehumanization

00:23:44 The Impact Of Patient Profiling On Care: Shining A Light On Undesirable Patients.

00:30:38 Navigating Uncertainty In Medicine: Honesty And Open-mindedness To Find Solutions

00:33:18 Efficiency And Patient-centered Approach In Medical Examinations

00:35:38 Exploring The Distinction Between Brain And Mind: Impact On Pain, Disease, And Healing

00:43:37 Confirmation Bias In Medical Diagnoses

00:46:50 Death's Pale Flag: A Paranormal Medical Thriller Summary

00:50:58 A Tribute To Bravery And Grace In The Face Of Neurological Challenges

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

Laura Roskelly is seeking medical treatment for an undiagnosed condition. Although she doesn't have a treatment plan yet, her condition is suspected to be Postural Orthostatic Tachycardia Syndrome (POTS). She discusses her frustrations with the medical system and the lack of understanding or support she has encountered. Laura describes experiencing symptoms such as fatigue, muscle aches, flu-like symptoms, and difficulty performing daily tasks. She discusses the challenges of finding effective treatments and shares her experiences with different medications and holistic approaches. Laura whole-heartedly emphasizes the importance of having a support system and understanding family members who believe in their struggles despite not appearing visibly ill. After watching a video of Summer Dashe describing similar symptoms, Laura felt a strong connection and began researching more about her condition, which she suspects is postural orthostatic tachycardia syndrome (POTS) and possibly Ehlers-Danlos syndrome. Laura is frustrated with the lack of understanding from others because her condition doesn't visibly show, leading to assumptions that she may be exaggerating or not truly experiencing difficulties. She explains the daily challenges she faces and hopes to find relief through proper diagnosis and treatment.

Key Topics:

00:05:30 Overcoming Vision Issues After A Concussion

00:07:32 Uncommon Symptoms And Frustrations: A Personal Account

00:11:51 Endless Search For Diagnosis: Battling Misunderstood Illness

00:22:40 Living With An Invisible Illness: The Struggles Of Daily Life.

00:23:31 Taking Action: Seeking Answers And Empowerment

00:30:59 Searching For Answers: Navigating The Healthcare System

00:39:02 Frustrations In Finding A Neurologist For Autonomic Nervous System Issues

00:45:29 Seeking Relief: Exploring Alternative Treatment Options For Chronic Pain

00:50:15 Lifestyle Changes As Initial Treatment For Newly Diagnosed POTS Patients

00:57:22 Seeking Treatment And Testing For POTS And Small Fiber Neuropathy

01:00:30 Living With Hyperadrenergic Pots: A Rollercoaster Of Adrenaline Rushes

01:03:34 Navigating Unidentified Symptoms: Trying Out Lifestyle Changes For Improved Understanding

01:06:37 Improved Heart Health And Self-care Awareness After Medical Evaluation

01:08:58 Empower Yourself To Cope With Debilitating Chronic Pain

01:13:27 Confusion And Uncertainty Surrounding Pots And Dysautonomia Diagnosis

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

In this episode, host, Laura Nozicka interviews Olivia Goodreau, a remarkable young lady who shares her journey with Lyme disease and the impact it has had on her life. Olivia's struggle with Lyme disease began at the age of six when she started experiencing tremors and blackouts. After years of tests and illness, she was finally diagnosed with Lyme disease and five other tick-borne illnesses.

Despite debilitating symptoms and numerous hospital visits, Olivia has not let her condition define her. She is the founder of the LivLyme Foundation, a nonprofit organization that provides support and financial assistance to children and their families who are struggling with Lyme disease and other tick-borne diseases. The foundation also supports researchers and scientists dedicated to finding effective treatments and cures for these diseases.

Olivia's determination to raise awareness about Lyme disease is evident in her book, "But She Looks Fine: From Illness to Activism," which can be found on Amazon or wherever you get your books.

Chapters:

00:00:00 Tick Tracker: A Revolutionary App For Real-time Tick Tracking

00:07:12 From Hope to Betrayal: A Journey of Misdiagnosis and Resilience

00:13:01 The Lyme Specialist: Solving the Puzzle of Tick-Borne Illnesses

00:15:43 Life-Changing Discovery: A Generic Drug Brings Hope and Relief After Six Years

00:19:57 Tick Protection 101: Permethrin Spray - Repel Ticks Without Harming Other Insects!

00:23:09 From Childhood Struggles to Advocacy: How Tick-Borne Illnesses Continue to Challenge the Health System

00:28:17 The Doctor Who Treats Lyme Disease with a Holistic Approach: Putting Health Above Profit

00:32:02 12-Year-Old Lyme Disease Warrior Starts Nonprofit to Fund a Cure

00:48:19 Tick Tracker: Protecting Livestock and Uncovering Connections Between COVID and Chronic Lyme Disease
Resources:Lyme Disease Non-Profit Organization | LivLyme Foundation

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

In this episode, Pamela Wirth, a hockey mom and lifelong learner, shares her journey with her son's undiagnosed illness and how she trusted her intuition to seek alternative treatments. She eventually found a doctor who recommended plant-based supplements as an option, which the Pamela was willing to try due to her desperation for a solution. She emphasizes the importance of optimizing our bodies and treating illnesses as a puzzle with changing pieces. Pamela also discusses the benefits of natural treatments and detoxing the body. She provides a protocol and additional support through her website, Hello Health. Pamela's book, "Saving My Son," has recently been published and is now available on Amazon.

Chapters:

00:00:00 Different Types of Medical Education and Training

00:02:08 From Heartache to Triumph: A Mother's Journey of Healing and Success

00:05:06 Unlocking the Secrets: How Blood Tests Revealed the Missing Puzzle Pieces in My Child's Health

00:06:45 Revitalizing Your Gut: The Key to a Healthy Future for Your Child

00:09:38 Uncovering the Hidden Dangers: The Surprising Truth About Tonsils and Infections

00:12:13 Uncovering the Hidden Truth: Exploring the Fascinating World of Strep and Dormancy in the Body

00:14:55 Finding Hope in Desperation: A Journey of Overcoming Fear and Doubt to Explore Alternative Options

00:19:36 From Hesitation to Hope: A Mother's Journey to Natural Healing for Her Son

00:24:05 From Illness to Inspiration: A Teen's Journey of Healing and Transformation

00:29:18 Unveiling the True Meaning of Functional Integrative Medicine: Going Beyond the Surface and Uncovering the Root Cause

00:30:19 Finding the Right Doctor: Exploring Your Options for Integrative and Functional Medicine

00:34:18 Unfair Education and Certifications: The Struggles Faced by Doctors in Patient Care

Key Takeaways:

Pamela's son had health issues that were difficult to diagnose and treat so she had to do a lot of research and testing to find solutions. She recommends taking notes on symptoms and patterns, getting tested for allergies and infections, and looking at lifestyle factors that could cause inflammation. With the guidance of a neurologist, she made supplements from plants to treat her son's infections and symptoms. Pamela acknowledges that doctors are under pressure and may not have all the answers, but also believes there needs to be more access to cost-effective testing. Her son is now healthy teenager and continues to be conscious of his diet and activity.

Resources:

Pamela's Website: http://www.hello.health/

Pamela's Podcast: https://kite.link/encourageing-wellness

Pamela's Book: "Saving My Son"

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

#podcast #guthealth #alternative #functionalmedicine #mysterydisease #childhooddisease #healthcare #doctors #undiagnossed #lymedisease #guthealth #toxicities

For a patient, coping and coming to terms with a chronic or terminal illness is beyond difficult or easy to accept. For a spouse caregiver, it can be a labor of love yet daunting, frustrating, scary and filled with sorrow and sometimes denial. Author, Suzanne Marriott shares her journey caring for husband, Michael for ten years after being diagnosed with Multiple Sclerosis. Suzanne lovingly discusses her experiences and talks about how Michael's diagnosis allowed him to explore different sides of himself as well as take their relationship to an entirely new level. Suzanne shares that mistakes are inevitable in caregiving but encourages others not to give up. She also reflects on how she coped with Michael's diagnosis as well as how she found a new appreciation for their partnership in the midst of her own cancer diagnosis. Her inspirational story is beautifully chronicled in her new memoir, Watching for Dragonflies, now available in bookstores and on Amazon.

Suzanne holds a BA in English from UC Berkeley, an MS in education from Cal State University, Hayward (now Cal State University, East Bay), and an MA in transpersonal psychology from The Institute of Transpersonal Psychology (now Sophia University). She is a member of The Institute of Noetic Sciences, Sierra Writers, and the National Association of Memoir Writers. She lives in an ecologically conscious cohousing community in the Sierra Nevada foothills. For more information on compassionate caregiving, visit Suzanne at www.suzannemarriottauthor.com

Chapters:

00:00:00 Introduction To The Desperate For A Diagnosis Podcast And Guest Suzanne Marriott

00:02:58 Suzanne Marriott's Debut Book 'Watching For Dragonflies' Set to Release in June 2023

00:06:42 Uncovering the Telltale Signs: A Caregiver's Journey with Multiple Sclerosis

00:09:29 A Diagnosis of MS and the Journey Forward

00:11:34 A Journey of Learning, Coping, and Accepting

00:17:48 Finding Your Voice: Standing Up

00:22:44 Firing a Doctor: A Caregiver's Journey to Advocate for Proper Medical Care

00:25:04 From Hospital to Home: A Caregiver's Transformative Journey with Michael

00:28:25 Finding Spiritual Strength in Caregiving: A Conversation with Suzanne Marriott

00:30:34 From One Step at a Time to Living Life to the Fullest: A Caregiver's Journey

00:33:25 Finding Support in Caregiving: How a Therapist and Hired Help Made All the Difference

00:37:43 Finding Strength in Nature: Michael and the Dragonflies

00:41:36 Finding Your Voice: The Power of Discernment and Intuition in Healthcare Advocacy

00:44:05 Finding Strength in the Face of Adversity: A Caregiver's Journey Through Cancer Diagnosis

Key Takeaways:1. Suzanne and her husband were always looking for ways to continue doing the things they love, even after he became wheelchair-bound.

2. They were in denial about his imminent death, despite multiple hospitalizations.

3. Suzanne's caregiving journey with her husband transformed their relationship and increased their intimacy.

4. Suzanne underwent personal transformations through working with dreams and becoming more assertive in advocating for her husband's care.Resources:

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

In thisconversation, Pam Cusick of Rare Patient Voice discusses the importance ofpatients participating in market research and clinical trials. With over 1400conditions currently represented, Rare Patient Voice welcomes everyone who iswilling to participate. The conversation also touches on the challengespatients face when seeking medical attention and how Rare Patient Voiceempowers patients by connecting them with opportunities to share theirexperiences and make things better for themselves and others. With some partsof trials being done at home or via Zoom, patients have opinions aboutparticipating in these studies from the comfort of their own homes. Overall,Rare Patient Voice values patient input and seeks to provide opportunities forpatients to have a voice in shaping healthcare decisions. Learn more about howto become a member of Rare Patient Voice's research panel atwww.rarepatientvoice.com

Chapters:

00:00:00 Introduction To Pam HandAnd Rare Patient Voice

00:03:41 Rare Patient Voice's InvolvementIn Over 8000 Projects

00:05:56 Perceptions Of ClinicalTrials Among The Public

00:09:27 Support For Patients InClinical Trials.

00:11:39 Need For An Airline ForPatients With Challenges

00:14:04 Empowering PatientsThrough Sharing Experiences.

00:18:03 The Importance Of PatientInput For Effective Solutions

00:22:34 The Importance Of SupportGroups For Patients And Caregivers

00:23:56 The Importance OfCaregiver Perspective In Research On Alzheimer's Dementia.

00:28:37 A Little Person's CancerStruggle And The Importance Of Persistence.

00:30:11 The Frustration OfMisdiagnosis And Patient Empowerment

00:34:07 Lack Of Awareness On TheBenefits Of Advocacy Groups

00:37:51 Constantly Changing ListOf Requested Disease Areas For Medical Research

00:41:56 Patient Inquiries AboutResearch Results

Key Takeaways:

1. Advocacy groups can be helpfulin pulling together information for research, but patients should also do theirown research.

2. A study found that over 50% ofpatients and caregivers surveyed were not working with an advocacy group.

3. Rare Rare Patient Voicewelcomes everyone and has over 1400 represented conditions.

4. Patient Voice conducts internalstudies to keep patients engaged and shares the results with them, but it isuncommon to receive results from studies they are involved in.

Resources:

Connect with Laura

Email: [email protected]

Website:www.desperateforadiagnosis.com

YouTube:https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn:https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

#MarketResearch #ClinicalTrials #RareDiseases#PatientAdvocacy #Healthcare #PatientExperience #PatientInsights#PatientEmpowerment #PatientEngagement #HealthcareResearch #PatientCentricity#PatientInclusion #PatientStories #PatientJourney #PatientEducation#PatientSupport #PatientCare #PatientPerspective #PatientDriven #podcast#rarepatientvoice

The Desperate For a Diagnosis Podcast features Melissa Schroeder discussing her journey with Ehlers Danlos (EDS) and POTS (Postural Orthostatic Tachycardia Syndrome). She talks about her struggles with joint dislocations and the difficulty of getting a diagnosis due to the high cost of genetic testing. Melissa shares her personal experience of struggling to find a diagnosis for their medical condition since childhood, even after seeing numerous doctors and specialists, including psychiatrists and therapists. She emphasizes the importance of persistence in seeking a diagnosis and encourages others to do her own research and advocate for themselves. Additionally, she discusses the value of having supportive friends and even a trained dog to help her through her medical journey.

Chapters:

00:00:00 Hope And Encouragement In Life's Surprising Twists And Turns

00:01:58 A Life With Animals: A Passion for Volunteering and A Special Pooch

00:03:47 Unexpected Connection Leads to New Dog for Volunteer at Animal Sanctuary

00:06:40 Childhood Struggles With Unidentified Pains and Breaks

00:10:21 Struggle With Diagnosis And Treatment For Rare Medical Condition

00:13:35 Genetic Testing For Medical Diagnosis Is Costly and Requires Further Exploration

00:24:35 Patient Shares Frustrating Experience with Doctor's Misdiagnosis and Lack Of Attention

00:31:56 Patient Shares Advice for Coping with Illness and Finding Support Groups

00:33:23 Support Group for Personal Well-being Beyond Diagnosis

00:37:42 A Reluctance To Deal With Complex Issues In Healthcare

Key Takeaways:

1. Melissa discusses her experience with doctors and specialists, often being misdiagnosed or not taken seriously.

2. She talks about the relief of finally receiving a diagnosis of Ehlers-Danlos Syndrome (EDS), but also the fear of how it will impact her future.

3. Melissa shares her daily routines and exercises to manage her symptoms, including walking and yoga.

4. She discusses the potential genetic link to EDS in her family and the challenges of pursuing genetic testing.

5. Melissa introduces her service dog, Ivory, who helps her with tasks such as retrieving medication and assisting during allergic reactions.

6. She also mentions her online community for individuals with EDS and offers advice for seeking a diagnosis.

Resources:

Melissa mentioned a wonderful community that helped her connect with people with her condition. Learn more about ⁠Insipire.com.⁠

• Searching for a diagnosis – or being diagnosed with a health condition – can be overwhelming.
• Inspire is the largest online community for health. It’s a safe, anonymous space where you can find information and support for over 3,000 conditions.
• On Inspire, patients and caregivers open up about their conditions, ask questions and share support for their health challenges.
• Find your community of support at Inspire.com.

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

YouTube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

Title: A "Special Boy's" Mystery Genetic Disorder: One Dad's Crusade To Find Answers, An Interview With Matthew Ciciretti

In this heartfelt episode, Laura interviews Matt Ciciretti, a super dad of five kids, two dogs, three cats, and a goldfish. He shares his journey with his 10-year-old son Mark, his "special boy," who was born with a cleft lip and palate, and developmental delays. Doctors also recently discovered an undiagnosed genetic condition, an apparent bone marrow disorder, that has left the medical community puzzled. Mark specifically has a partial deletion of his 21 chromosome, called partial monosomy syndrome and on his 22 chromosome, he has a partial addition called partial trisomy syndrome. These syndromes are so unique that there isn't even a database of children like Mark. So the mystery remains. Mark suffers from spontaneous nosebleeds and often requires trips to the emergency room with subsequent transfusions and hospital stays. Navigating the healthcare system can be challenging, especially when your child doesn't fit the classical mold of a diagnosis. Matt discusses his experiences with various physicians, the obstacles they have faced while seeking answers about Mark's condition, and the importance of advocating for your child's medical care.

Key Topics:

1. Journey With a Child's Undiagnosed Condition (0:00:01): Matt shares the beginning of his journey with Mark, who was born with a cleft lip and palate and a unique genetic makeup that doctors have struggled to diagnose.

2. Unidentified Cause of Low Platelets (0:16:03): Matt discusses the challenges faced while trying to identify the cause of Mark's low platelets, leading to multiple hospitalizations and tests.

3. Advocating for Medical Care (0:25:43): Matt shares his experience of pushing medical professionals to provide additional information and insight into Mark's condition, eventually leading to a mild autism diagnosis and access to resources and support.

4. Navigating the Healthcare System (0:42:04): Matt expresses his frustrations with the lack of accountability and transparency in the healthcare system and the emotional toll a lack of answers can take on a family. However, Matt applauds the efforts of Mark's pediatric hematology team.

5. Supportive Relationships in Times of Need (0:55:17): Matt reflects on the incredible support he has received from loved ones and the importance of maintaining resilience in the face of challenges.

Advice for other parents in similar situations:

- Find a physician who truly cares about your child

- Explore options for top-tier medical care, depending on your insurance

- Seek support from loved ones and professionals to help navigate the healthcare system...Matt offers even more advice in the podcast.

Don't miss this inspiring and informative conversation with Matt Ciciretti as we learn about the challenges of parenting a child with an undiagnosed condition and the importance of continuing to advocate for his or her well-being.

Connect with Laura

Email: [email protected]

Website: www.desperateforadiagnosis.com

Youtube: https://www.youtube.com/@desperateforadiagnosis

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

LinkedIn: https://www.linkedin.com/showcase/the-desperate-for-a-diagnosis-podcast/

This is a podcast featuring inspirational patient stories of perseverance to find the answers! 

Welcome to The Desperate for a Diagnosis Podcast with Laura Nozicka.

I am so thrilled to be launching this podcast. I had intended to launch back in February of this year, 2023, but God had another plan. My dad passed away on January 29, 2023. He had been diagnosed with congestive heart failure and type 2 diabetes in 2012. The thing is he was not unhealthy, he didn’t abuse himself, wasn’t a drinker or smoker but had a silent heart attack that was found on a fluke when we went to the hospital for another reason. So often these unexpected findings pop up and I’d like to think that God or the universe is watching out for us when those things happen. My hope is that my dad is watching over me as I pursue this podcast journey on behalf of making the healthcare system better and more compassionate while helping patients and caregivers find answers for symptoms and help them cope along the way.

Have you seen doctor after doctor begging to put a name to your symptoms? How long have you been seeking answers? Months? Years? Are you tired of the healthcare revolving door? How many times have you heard these words from doctors, family, and friends?

"It’s all in your head!"

"You don’t look sick."

"Your tests are normal."

"It’s probably anxiety."

"There’s nothing wrong with you!"

My podcast was born out of my own experience with hearing "your tests are normal and there's nothing wrong with you," when all along I knew something was not right. After seeing multiple physicians, some of my symptoms have resolved. Some remain a mystery.

The creation of this podcast is also driven by having interviewed hundreds of patients via market research interviews (market research is what I do for a living). So often patients have expressed feeling dismissed, labeled, pigeonholed, and completely frustrated. They also have been led to feel as if they are crazy and that it really is "all in your head!" So many patients are exhausted from swirling through the healthcare "revolving door" and feel as if they have nowhere else to turn. Many have given up and have accepted their mysterious symptoms.

The goal of the podcast is to...

- Offer hope to people without answers as they may hear guest stories that makes them say, "that sounds like me!"  and instill the confidence patients need to advocate for themselves.

- Bring these medical mysteries, diagnostic roadblocks, and potential solutions to a broad reach of patients and medical professionals.

- Encourage healthcare leaders to think differently about early, cost-effective diagnostics and the associated benefits to getting patients into treatment sooner. 

- Illuminate the patient experience as a reflection of how patients perceive the healthcare system and their hope and belief that they can and will get a diagnosis. 

- Present viewpoints from both sides of the bedside...the patient and healthcare providers. 

I’m your host Laura Nozicka. I'm from Chicago and have an extensive career in healthcare working in non-clinical positions. I've worked side-by-side with physicians and clinicians in dozens of specialties, and interviewed hundreds of medical professionals and patients gleaning insights from their experiences.

To learn more or to become a guest, visit ⁠www.desperateforadiagnosis.com⁠ or email [email protected].

*I am not a medical professional, nor am I affiliated with any healthcare, pharmaceutical or device company. I am an entrepreneur, and I am an independent market researcher focused on helping healthcare organizations and pharmaceutical companies better understand the patient’s perspective. The podcast is not intended to offer medical advice but to merely share the stories and perspectives of podcast guests.