41 episodes

The mission of our podcast is to support you, our listeners and to create community, as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. That is the focus of It Happened To Me, which wants to help you overcome limitations and live a full and satisfying life. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me…I’m not alone and neither are you.
We encourage you to learn more at ItHappenedToMePod.com.
Please use the contact form on our website to submit your guest suggestions, comments, questions, ideas, and feedback for the show, you can also email us directly at ItHappenedToMePod@gmail.com.
It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our ...

It Happened To Me: A Rare Disease and Medical Challenges Podcast Cathy Gildenhorn, Beth Glassman, and Kira Dineen (DNA Today)

    • Science
    • 5.0 • 31 Ratings

The mission of our podcast is to support you, our listeners and to create community, as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. That is the focus of It Happened To Me, which wants to help you overcome limitations and live a full and satisfying life. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me…I’m not alone and neither are you.
We encourage you to learn more at ItHappenedToMePod.com.
Please use the contact form on our website to submit your guest suggestions, comments, questions, ideas, and feedback for the show, you can also email us directly at ItHappenedToMePod@gmail.com.
It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our ...

    #40 Overcoming Crohn’s Through Pilates with Ryan Hodgkinson

    #40 Overcoming Crohn’s Through Pilates with Ryan Hodgkinson

    In this insightful episode of It Happened To Me, we are joined by Ryan Hodgkinson, a highly respected Pilates instructor whose journey into fitness was profoundly shaped by his personal battle with Crohn’s disease. With over two decades of experience in martial arts and personal training, Ryan has developed a unique approach to Pilates that caters to the individual needs of his clients.
    Ryan Hodgkinson,  PMA® CPT, ACE CPT, was first introduced to Pilates by his sister Heidi, a licensed Physical Therapist and certified Pilates Instructor, to help him with ruptured discs he suffered as a result of numerous abdominal surgeries.
     
    Recognizing the benefits that Pilates provides towards overall health and physical fitness, he completed his 750 hour comprehensive Pilates Machine and Apparatus​​.
     
    Certification in 2008 and has been teaching Pilates full-time ever since. In addition to teaching Pilates, Ryan is a Certified Personal Trainer, TRX Instructor and has 23+ years practicing and teaching martial arts. Ryan draws from all aspects of his training and years of experience to create tailored programs for individual client's needs. ​
     
    Episode Highlights:
     
    Understanding Crohn’s Disease:
    Definition: An inflammatory disease causing swelling in the digestive tract, often affecting the small intestine.
    Symptoms: Diarrhea, fever, fatigue, abdominal pain, blood in stool, mouth sores, reduced appetite, and more.
    Complications: Bowel obstructions, ulcers, fistulas, malnutrition, increased colon cancer risk, and other health problems.
     
    Diagnosing and Treating Crohn’s:
    Diagnosis: Typically involves a combination of medical history, physical exams, and specialized tests.
    Causes and Risk Factors: Unknown exact cause; factors may include immune system triggers, heredity, age, ethnicity, and certain medications.
    Treatment: Anti-inflammatory drugs, corticosteroids, immune system suppressors, and biologics.
     
    Ryan’s Personal Journey:
    Diagnostic Journey: Insights into how Ryan’s journey with Crohn’s began.
    Impact of Martial Arts: The role of karate in Ryan’s physical and emotional recovery.
    Living with Ostomies: Experiences and challenges during high school and college.
    Family and Advocacy: The crucial role of family support and advocacy in coping with Crohn’s.
     
    Transition to Pilates:
    Career Decision: How Ryan’s health journey influenced his career in Pilates.
    Pilates and Chronic Pain: The benefits of Pilates for chronic back pain and overall health.
    Misconceptions about Crohn’s: Debunking common myths based on Ryan’s experiences.
     
    Incorporating Pilates Principles:
    Principles: Concentration, control, core strength, fluidity, precision, and breathing.
    Training Programs: Tailoring programs for individuals with chronic pain or post-surgery recovery.
    Mind-Body Awareness: Enhancing overall well-being through Pilates.
     
    Advocacy and Pain Management:
    Alternative Strategies: Advocating for alternatives to opioids, like Pilates and physical therapy.
    Personal Insights: Managing pain from scar tissue and nerve issues with specific exercises.
    Ryan recommends that people check out ostomy.org for further information.  
    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
     
    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
     
    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

    • 42 min
    #39 Genetic Testing for Rare Diseases with Amy Patterson

    #39 Genetic Testing for Rare Diseases with Amy Patterson

    Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasias. 
     
    Amy Patterson (she/her) is a licensed pediatric and adult genetic counselor in the Johns Hopkins Department of Genetic Medicine. She primarily works with patients in the Greenberg Center for Skeletal Dysplasias as well as the General Genetics clinic. Especially in the skeletal dysplasia space, Amy works to promote a holistic patient experience, including psychosocial counseling, connection with patient advocacy groups, informed consent, genetic testing and interpretation of results, coordination of care, and discussion of research options. Amy was a LEND Fellow and graduated from the Boston University Genetic Counseling program in 2021. She has focused much of her research and clinical work on the intersection of rare conditions, disability, and patient advocacy.
     
    Amy initially started advocating in the rare disease space due to her best friend’s sibling’s rare genetic disorder, Congenital Hyperinsulinism. We actually interview their mother on Episode 37 of It Happened To Me. As a high schooler, Amy started educating their peers and community about rare disease on Rare Disease Day every year. After moving to Boston, she started volunteering at a Community Engagement Liaison for the Rare Action Network (RAN), the advocacy branch of NORD, then became the RAN Massachusetts State Ambassador. Through this work, she started putting on Rare Disease Day events at Boston Children's Hospital, and now at Johns Hopkins Hospital as a genetic counselor. Rare Disease Day allows all rare disease stakeholders to come together to share their experiences and continue to learn. Amy is passionate about this global effort to raise awareness and advocate for improved quality of life, diagnosis, and access to care for Rare patients and families.
     
    Want to listen to our other episodes with genetic counselors? 
     
    In Episode 4, our Executive Producer, Kira Dineen, who is also a genetic counselor, shares how genetic counselors can help people navigate having a rare disease. 
     
    In Episode 7, Genetic Counselor Karen Grinzaid explains prenatal and cancer genetic testing. Kira also joins as a guest host since this is her area of expertise. 
     
    Want to speak to a genetic counselor? Find one in your area via FindAGeneticCounselor.org.  
     
    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
     
    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
     
    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

    • 42 min
    #38 Dr. Tara Zier on Stiff Person Syndrome

    #38 Dr. Tara Zier on Stiff Person Syndrome

    In this enlightening episode of It Happened To Me, we are joined by Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation. Dr. Zier shares her personal journey with Stiff Person Syndrome (SPS), a rare and debilitating autoimmune disorder, and discusses her mission to advance research, treatments, and awareness for this condition.
    Introduction:
    Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation
    Background on Stiff Person Syndrome: a rare autoimmune disorder characterized by muscle stiffness and painful spasms
    Key Discussion Points:
    Understanding Stiff Person Syndrome:
    Description and symptoms of SPS
    Impact on daily life for those affected
    Dr. Zier’s Journey:
    Her personal experience with SPS and the path to diagnosis
    The challenges faced and the resilience shown
    Managing Symptoms:
    Current medications and therapies including muscle relaxers, infusions, plasma exchange, physical therapy, and more
    Medications and treatments to avoid for SPS patients
    Foundation’s Mission and Goals:
    The establishment of the Stiff Person Syndrome Research Foundation
    Aims to fund research, develop treatments, and find a cure
    Collaborations and Achievements:
    Partnerships with the Stiff Person Syndrome Center at Johns Hopkins and the Mayo Clinic
    Contributions to the global patient community
    Insights into Research and Treatments:
    Current state of SPS research and available treatments
    The importance of raising awareness and public understanding
    Role of Patient Communities:
    The significance of patient communities in advancing research and providing support
    How the foundation fosters connections with patients worldwide
    Support Beyond Fundraising:
    Additional ways the foundation aids individuals and families affected by SPS
    Advice for Aspiring Advocates:
    Encouragement and guidance for those looking to establish foundations or support medical research for rare diseases
    Personal Reflections:
    Stories and experiences from the SPS community that have touched Dr. Zier
    Dr. Zier’s personal strategies for maintaining mental health amidst her advocacy work
    Future Aspirations:
    Hopes and aspirations for the future of the Stiff Person Syndrome Research Foundation
    Vision for the field of SPS research and treatment
    Closing Remarks:
    Dr. Zier’s final thoughts and gratitude for the opportunity to share her journey
    Encouragement for listeners to support SPS research and awareness initiatives
    Episode Links:
    Stiff Person Syndrome Research Foundation
    Follow Dr. Tara Zier on Twitter
    Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
     
    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
     
    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

    • 45 min
    #37 Congenital Hyperinsulinism with Advocate Julie Raskin

    #37 Congenital Hyperinsulinism with Advocate Julie Raskin

    In this enlightening episode, we are joined by Julie Raskin, Chief Executive Officer of Congenital Hyperinsulinism International (CHI). Julie's journey began when her son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin leading to severe hypoglycemia. Determined to improve Ben’s life and the lives of others affected by HI, Julie co-founded CHI in 2005.
     
    Discussion Topics:
     
    Julie shares her son Ben’s story, his diagnosis with HI, and the journey that led to the formation of CHI.
    Symptoms of congenital hyperinsulinism (HI) and the challenges in diagnosing this rare condition.
    Genetic factors and inheritance patterns associated with HI, including the probability of siblings being affected.
    The impact of HI on Ben's childhood and current life.
    Julie’s experiences and insights on managing HI and supporting a child with the condition.
    The story behind the founding of CHI and its mission to improve the lives of babies born with HI worldwide.
    Key challenges faced by families with HI diagnoses and how CHI provides support.
    CHI’s Key Initiatives including the The HI Global Registry which documents the natural history of HI with over 559 participants from 53 countries.
    The HI Centers of Excellence designation program: Encouraging the highest standards of care for babies and children with HI.
    CHI’s efforts in securing funding for research grants, supporting patients with emergency funds, and medication donations.
    Collaboration with expert clinicians, researchers, and biotech professionals to advance HI research and treatment.
    Insights from the virtual support group hosted by CHI, with over 2,300 family members participating.
    Importance of patient advocacy in rare disease research and healthcare policies, and CHI's role in this area.
    Julie’s advice for families dealing with HI or other rare diseases based on her personal experiences.
    Ways individuals and organizations can contribute to CHI’s mission and support HI-affected families.
    The future of HI research and treatment, and CHI’s role in shaping this future.
     
    Learn more about Congenital Hyperinsulinism International (CHI) and how you can get involved: at congenitalHI.org 
     
    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
     
    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
     
    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

    • 51 min
    #36 Cochlear Implant Surgery and Recovery with Marc Bassin

    #36 Cochlear Implant Surgery and Recovery with Marc Bassin

    In the last episode of "It Happened To Me," (Episode 35) Marc Bassin shared his experience of sudden hearing loss in his left ear. After four years and countless healthcare providers, he went through with having a cochlear implant surgery.
     
    The first interview in Episode 35 was recorded before his surgery. If you haven't yet listened to Marc's previous episode on the podcast, we highly recommend checking it out for a comprehensive understanding of his journey leading up to the surgery. 
     
    This episode was recorded after Marc recovered from the procedure and shares his experience. Marc's openness and candor provide valuable insights into the process of cochlear implantation and the transformative impact it has had on his life. If you haven't yet listened to Marc's previous episode on the podcast, we highly recommend checking it out for a comprehensive understanding of his journey leading up to the surgery.
     
    Marc's professional career in commercial real estate and his active lifestyle as a "fitness freak" make his sudden hearing loss in one ear all the more unexpected. Despite the shock, Marc embarked on a courageous journey to seek medical attention and explore treatment options, ultimately leading him to undergo cochlear implant surgery.
     
    Interview Highlights:
     
    Onset of Hearing Loss: Marc provides a recap of the events leading to his sudden hearing loss in October 2019 and the decision to pursue medical attention. His proactive approach to seeking help underscores the importance of early intervention in addressing hearing issues.
     
    Understanding Cochlear Implants: Marc offers valuable insights into cochlear implants, explaining the technology behind them and the method used to restore hearing. This discussion sheds light on the intricate process of cochlear implantation and its potential benefits for individuals with hearing loss.
     
    Surgical Experience and Recovery: Marc walks us through his cochlear implant surgery experience, detailing the procedure and the emotions he encountered along the way. He shares his journey of recovery, from the immediate aftermath of the surgery to his progress in the months that followed.
     
    Mapping and Adjustment: Marc discusses the second step in the process: cochlear implant activation, also known as mapping. He provides clarity on what mapping entails and shares his firsthand experience of adjusting to the newfound sounds and sensations.
     
    Expectations and Challenges: Marc reflects on his expectations for the future of his hearing and the challenges he has faced post-surgery, including the impact of tinnitus and the adjustment to interpreting sounds anew. Despite the challenges, Marc remains optimistic about his ongoing recovery journey.
     
    Marc’s courage, resilience, and willingness to educate others about his experience serve as a source of inspiration for all facing similar challenges. As Marc continues his journey towards improved hearing and well-being, we stand in awe of his determination and strength.
     
    Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
     
    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
     
    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

    • 33 min
    #35 Sudden Hearing Loss with Marc Bassin

    #35 Sudden Hearing Loss with Marc Bassin

    Despite leading an active lifestyle, Marc experienced a sudden and unexpected loss of hearing in his left ear, dramatically altering his daily life. Join us as Marc shares his courageous journey from the onset of hearing loss to his upcoming cochlear implant surgery.
     
    Marc is not your typical real estate professional. With a penchant for adventure, he spends his leisure time biking thousands of miles annually, hitting the golf course, playing pickleball, and conquering ski slopes. However, his world was turned upside down on October 26th, 2019, when he encountered the startling reality of sudden hearing loss.
     
    Interview Highlights:
     
    Onset of Hearing Loss: Marc recounts the day when he first noticed the onset of hearing loss and the immediate steps he took to seek medical attention. Despite his active lifestyle, the sudden loss of hearing prompted Marc to pursue answers and solutions.
     
    Diagnostic Journey: Marc shares insights into the consultations with various medical providers and the diagnostic tests involved in uncovering the cause of his hearing loss. From initial consultations to diagnostic tests, Marc sheds light on the medical journey he embarked upon.
     
    Impact of Tinnitus: The presence of tinnitus added another layer of challenge to Marc's daily life, affecting his interactions and emotional well-being. Marc discusses the impact of tinnitus and how he navigated its effects on his daily activities and interactions.
     
    Decision for Cochlear Implant: Marc opens up about the factors that led to his decision to undergo cochlear implant surgery, exploring alternative options and the anticipation surrounding the surgery scheduled for later in the week.
     
    Coping and Support: Throughout his journey, Marc has relied on coping strategies, support from loved ones, and a positive outlook to navigate the challenges of hearing loss and isolation. He shares valuable insights into coping mechanisms and the importance of support networks.
     
    As he prepares for his cochlear implant surgery, our thoughts and best wishes are with him. Marc's resilience and determination serve as an inspiration to all facing similar challenges of hearing loss and isolation.
     
    Stay tuned for the next episode to hear how his cochlear implant surgery went and how it has or hasn’t affected his hearing. In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
     
    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

    • 36 min

Customer Reviews

5.0 out of 5
31 Ratings

31 Ratings

KrissyD63 ,

Curiosity and Compassionate

Cathy and Beth are wonderful hosts. They bring their interest, compassion and curiosity to every interview. I love hearing peoples stories and learn.

candy208433410 ,

Well done podcast

Thank you Cathy and Beth for sharing such personal health issues. It was educational and informative, specifically how to deal with challenging medical issues, how and where to get help, and most important, to maintain a positive mindset to go forward. You both are an inspiration and I applaud your generosity for sharing your stories and for the work you continue to do for others. Best wishes to you both!

JoeBaker5682 ,

Educates and Builds Community

I thoroughly enjoyed listening to the trailer and the first three episodes of It Happened to Me. Cathy and Beth are providing a service by sharing their rare diseases and health challenges and providing a forum for others to do the same. This serves as community building for not only those facing health issues but also their family and friends and the medical professionals trying to diagnose, treat, and research rare diseases. I look forward to listening to all of the future episodes of this podcast!

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