It Happened To Me: A Rare Disease and Medical Challenges Podcast

By: Cathy Gildenhorn Beth Glassman and Kira Dineen (DNA Today)
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  • Summary

  • 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 ...
    All rights reserved to the team: Cathy Gildenhorn, Beth Glassman, & Kira Dineen (DNA Today)
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Episodes
  • #48 Sudden Cardiac Death with The Dressmaker’s Mirror’s Dr. Susan Liebman

    #48 Sudden Cardiac Death with The Dressmaker’s Mirror’s Dr. Susan Liebman
    Nov 18 2024
    In this episode of It Happened To Me, we are honored to speak with Dr. Susan W. Liebman, a trailblazing molecular geneticist whose work has revolutionized our understanding of protein misfolding diseases such as ALS and Alzheimer’s. Dr. Liebman has spent her career using yeast as a model organism to uncover the mechanisms behind these diseases, advancing the field of molecular genetics. With over 100 publications in leading journals, including Nature, Science, and Cell, and more than $13 million in research funding, her contributions to the field are substantial. Susan began her scientific journey as one of MIT’s early female undergraduates (B.S. 1968) and went on to earn advanced degrees from Harvard (M.S. 1969) and the University of Rochester (Ph.D. 1974) medical schools. In addition to her research, she taught genetics to undergraduate and graduate students for more than 35 years. Dr. Liebman joins us to discuss her newly released book, “The Dressmaker’s Mirror: Sudden Death, Genetics, and a Jewish Family’s Secret”. The book delves into her family’s journey of uncovering a previously unknown heart disease gene, blending scientific discovery with a deeply personal narrative of love, loss, and resilience. Key Topics Discussed in This Episode: - The Discovery of a Genetic Mutation: Dr. Liebman shares how the sudden passing of her niece led to the identification of a deadly mutation in her family and how this discovery has impacted their lives. - Understanding Genetic Risks: Insights into the FLNC gene, its role in cardiomyopathy, and how carriers can manage their health. - The Role of Genetic Testing and Counseling: How family history and genetic counselors play pivotal roles in guiding families through difficult medical decisions. - Barriers to Genetic Testing: Challenges in accessing cardiomyopathy genetic testing and how healthcare systems can address these issues. - Balancing Science and Faith: Navigating religious beliefs and social stigmas while providing potentially life-saving medical care. - Population-Wide Screening: Ethical and medical implications of screening for genetic mutations prevalent in specific populations, such as Ashkenazi Jews. - Inspiring Women in Science: Dr. Liebman reflects on her groundbreaking career as a woman in molecular genetics during an era when the field was male-dominated. Dr. Liebman’s story is a testament to the power of science, family, and resilience. Through her research and advocacy, she has brought attention to the FLNC gene, which is now recognized by the American College of Medical Genetics (ACMG) as actionable, paving the way for improved cardiac care and genetic testing protocols. It Happened To Me Podcast Episodes Referenced: #24 Neuro-Ophthalmic Disorders with Dr. Andrew Carey#27 Prevention of Blindness Society Additional Resources: The American College of Medical Genetics Actionable Genes List including the FLNC GeneDr. Liebman urges families to bank family’s DNA, so it’s available for genetic testing in the future. She specifically recommends Securigene during the interview. You can win a free copy of “The Dressmaker’s Mirror”! Head over to our Executive Producer’s Kira Dineen’s podcast’s Instagram, X and LinkedIn posts to enter the giveaway. You can also enter the Goodreads giveaway for additional opportunities. Can’t wait to see if you won? Buy a copy of the book through the publisher (with code RLFANDF30) or on Amazon. You can learn more about the author Dr. Susan Liebman, on her website here. If you are interested in booking her as a speaker check out her Media Kit here, you can reach out to our host Kira Dineen (info@DNAtoday.com) as she is also her Book Launch Agent! 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.
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    38 mins
  • #47 Living with NAION: Rachel Schreiman’s Journey Through Vision Loss and Advocacy

    #47 Living with NAION: Rachel Schreiman’s Journey Through Vision Loss and Advocacy
    Nov 4 2024
    In this powerful and educational episode of It Happened To Me, we sit down with Rachel Schreiman who turned her personal struggle with vision loss into a mission to support others. Rachel shares her story of resilience after experiencing two episodes of Non-Arteritic Anterior Ischemic Optic Neuropathy (NAION), a rare and debilitating eye condition caused by insufficient blood flow to the optic nerve. These episodes left her with significant central vision loss, but instead of giving up, Rachel embraced a new path. Rachel Schreiman is a CPA and musician who holds an MBA from the University of California, Irvine. In 2019 while working as the Controller for a trade association in Washington DC, she suffered two episodes of Non-arteritic anterior ischemic optic neuropathy (NAION), rendering her legally blind with significant central vision loss. After receiving rehabilitation care and training she started a new "career" devoted to others with low vision. She now works for Dr. Suleiman Alibhai OD, a low vision rehabilitation optometrist, and as a Resource Navigator for the Prevention of Blindness Society of Metropolitan Washington (POB). Both of these positions allow her to give back to others with low vision by sharing information about resources and demonstrating how to use many of the devices, assistive technologies and applications available that allow users to live full and independent lives. Key Topics Discussed: The Onset of NAION: Rachel recounts the initial episode of NAION in 2019, the symptoms she experienced, and her journey to diagnosis. She describes NAION as a "stroke in the eye," explaining how lack of blood flow to the optic nerve led to significant vision loss. Risk Factors and Triggers for NAION:Rachel discusses possible risk factors, such as sleep apnea and cardiovascular issues, which can contribute to the development of NAION. She shares insights into lifestyle adjustments and precautions she now takes to help manage her health. Navigating a Second Episode: Five months after the first NAION episode, Rachel suffered another in her other eye. She reflects on the impact of this second event, the rapid response from her medical team, and the steps she took to prepare for further adaptation to vision loss. Diagnosing and Treating NAION: Rachel describes the challenges of diagnosing NAION, which can be easily mistaken for other conditions such as multiple sclerosis, brain tumors, or stroke. She also explains the diagnostic process and the types of specialists who are essential for accurate diagnosis and care. Adapting to Vision Loss:Rachel opens up about the difficult decision to stop driving and the profound impact it had on her independence. She shares the changes she made in her home and daily routines, along with the support she received from her husband and family, which helped her navigate life with low vision. Coping Strategies for Low Vision: Rachel reveals the practical and emotional strategies she uses to cope with vision loss, from using assistive technologies to finding new hobbies and ways to stay connected with her passions. Advocacy and Empowerment in Low Vision Care: Through her roles with Dr. Alibhai and the POB, Rachel describes her work in educating others about low vision resources, providing hands-on training with assistive devices, and guiding patients and their families through the journey to independence. She also highlights the services POB offers for those with low vision and encourages listeners to seek support early in their vision loss journey. Resources Mentioned: - Episode 24 with Dr. Andrew Carey – For more on optic neuropathies, including NAION, check out our conversation with neuro-ophthalmic specialist Dr. Carey. - Episode 27 with Prevention of Blindness – Learn more about POB’s programs and resources for individuals with low vision on POB’s website. - Assistive Technology Resources – Recommended apps and devices for managing life with low vision: Seeing AI, VoiceDream, BeMyEyes, Aira. 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.
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    56 mins
  • #46 Decoding Colon Cancer: Expert Insights on Screening and Genetics from Gabrielle Shermanski

    #46 Decoding Colon Cancer: Expert Insights on Screening and Genetics from Gabrielle Shermanski
    Oct 21 2024

    To learn about colon cancer, we are joined by Gabrielle Shermanski. Gabrielle Shermanski completed her Master of Science in Human Genetics at Sarah Lawrence College in 2020. She is a licensed, board-certified Genetic Counselor at Geisinger with 4 years of clinical experience in adult oncology. Gabrielle's primary interests include helping patients with inherited breast cancer syndromes and inherited GI syndromes facilitate further care and communicate results to family members. Gabrielle has a strong interest in education, mentorship, and outreach opportunities. Her hobbies outside of work include cooking and hanging out with her puppy, RJ.

    During the episode Gabrielle mentioned the National Comprehensive Cancer Network’s colon cancer guidelines, which you can find here.

    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.

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    28 mins

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