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

#8 Oculoplastic Surgery with Dr. Shannath Merbs

Oculoplastic surgeon Shannath Merbs shares her expertise in cosmetic and reconstructive surgery of the eyelids, orbit, and face. Dr. Merbs is a Professor of ophthalmology and Visual Science at the University of Maryland, School of Medicine. Dr. Merbs is an Oculoplastic surgeon specializing in cosmetic and reconstructive surgery of the eyelids, orbit and face. The discussion in this episode is in two parts. In the first half of the conversation we focus on Dr. Merbs’s surgical practice in Baltimore. The second part we dive into her research and heroic efforts to treat patients with an eye condition called Trachoma, the most common cause of blindness from infection. Blindness occurs after years of repeated infections. The eyelashes turn inward and rub the eye until the cornea turns white and the individual loses their sight. More than 2 million people are at risk. Surgery is the only cure. Dr. Merbs performs life altering surgeries in Africa and invented a surgical instrument to improve the outcome of the surgery. Our disclosure is that our co-host Beth Glassman is Dr. Merbs’ surgical patient and her hero. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#7 Prenatal and Cancer Genetic Testing with Karen Grinzaid

JScreen Genetic Counselor Karen Grinzaid explains the options for genetic testing for cancer risk and the chance to have a biological child with a genetic condition. Karen A. Grinzaid is an Assistant Professor of Human Genetics and the Executive Director of JScreen, a national online genetic disease screening program based out of Emory University School of Medicine. She has extensive experience in prenatal, pediatric and adult genetic counseling and testing, as well as clinical care and clinical research. Karen is proud of JScreen’s success in helping couples across the United States have healthy babies AND in giving people information that helps prevent the devastating effects of genetic diseases and hereditary cancers. Karen received her B.A. in Psychology from Northwestern University and her M.S. in Human Genetics from Sarah Lawrence College. She is certified in Genetic Counseling by the American Board of Medical Genetics/American Board of Genetic Counseling and as a Clinical Research Coordinator through the Association of Clinical Research Professionals.Check out more about carrier screening and cancer genetic testing at JScreen.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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#6 Glaucoma with Dr. Mona Kaleem

Dr. Mona Kaleem is an associate professor of ophthalmology at Wilmer Johns Hopkins in North Bethesda, Maryland. In this episode Dr. Kaleem shares her expertise about risk factors, screening, diagnosis, resources, development, and treatment for glaucoma. Dr. Kaleem shares resources including her own podcast, Diagnosis Glaucoma and Sigtwise, a project designed by Dr. Kaleem to evaluate eye clinics for accessibility. In This Episode We Discuss: Types of glaucomaRisk factors to develop glaucomaDiagnosis of glaucomaTreatments for glaucomaRegular ophthalmologist vs specialist Mission of Diagnosis Glaucoma podcastDr. Kaleem’s research project, SightwiseGrants available for glaucoma research Advice for those with vision lossCheck out Hadley.edu for further support and resources for adjusting to low vision. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#5 Wolfram Syndrome with Dr. Sarah Gladstone

Dr. Sarah Gladstone joins the show to share her perspective of Wolfram Syndrome being a parent of a child with the condition and a physician. Sarah Gladstone (She/Her) is a pediatrician who completed her MD at Vanderbilt University and pediatric residency at The Children's Hospital of Boston prior to practicing in primary care for 15 years. She began working with WS researchers and parents to facilitate communication and help find a treatment for WS after her daughter was diagnosed with WFS1-Related Disorder in 2016. Sarah started the Unravel Wolfram Syndrome Fund to support WS research by Dr. Fumi Urano at Washington University in St. Louis. She joined forces with other WS parents to help create WSRA in 2020 and the Wolfram Syndrome Global Registry in 2022. Dr. Gladstone is constantly intrigued by the connections that can be made between WS and other ER stress diseases and this inspires my continued search for repurposing of chaperones and small molecules to treat WS. She has met amazing researchers and parents who work with many different rare diseases as a result of comparing notes and progress in the rare disease treatment world.Check out unravelwolframsyndrome.com and wsresearchalliance.org, both mentioned during the show. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#4 Genetic Counseling for Rare Diseases with Kira Dineen

Genetic Counselor, and our podcast co-producer, Kira Dineen shares her insight on when to pursue genetic counseling and how genetic counselors can help people in the rare disease community.Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor’s of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master’s of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Connecticut. On This Episode We Answer:When should a person or couple consider genetic counseling?Is a referral required to see a genetic counselor?Does insurance cover genetic counseling for this?Is genetic testing done before the visit? How many visits are we talking about?Do you ever suggest adoption as an option? When?How do you help people with genetic conditions?Why get tested at all?What have you learned from interviews with patients and rare disease advocates?Do you recommend joining rare disease advocacy groups?Why study rare diseases?What is CRISPR? How could this help treat…or even cure…genetic conditions? You produce a rare disease podcast that focuses on nano rare diseases. What’s a nano-rare disease? 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#3 Wolfram Syndrome with Cathy Gildenhorn

Beth Glassman interviews her co-host Cathy Gildenhorn about her rare disease, Wolfram Syndrome. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#2 Glaucoma and Low Vision with Beth Glassman

Cathy Gildenhorn interviews her co-host Beth Glassman about her journey with glaucoma and low vision.Co-host Beth Ourisman Glassman is a third-generation Washingtonian with a deep interest in health care. She is a trustee of the Sibley Memorial Hospital Foundation in Washington and co-chair of A Woman’s Journey for the National Capital Area, the 27-year-old women’s health program established by Johns Hopkins Medicine. Beth is passionate about empowering women to make the best health care decisions for themselves and their families. Having experienced health challenges herself, she believes that the power of connection and sharing one’s own story is instrumental to the healing process. As co-host of the podcast “It Happened to Me,” she shares her ordeals, interviews guests who have experienced similar struggles, and reveals how to overcome and cope with some of the most difficult health challenges.On This Episode We Discuss:Beth’s story of glaucoma and vision lossModification and adaptations for low visionResources from low vision centers Advice for those with rare diseases 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

#1 Inspiration to Launch “It Happened To Me”

o-host Cathy Zacks Gildenhorn has devoted much of her life to improving the lives of others and connecting women to Jewish life and each other. She has served on several local, national and international boards. Cathy also served as presidential appointee to the United States Holocaust Memorial Council and worked on the opening of the museum. Currently, Cathy serves as editor in chief and designated spokesperson for the book, Redefining Moments: End of Life Stories for Better Living. Several years ago Cathy was diagnosed with a rare, genetic disease. Since then she has passionately dedicated her life to creating this supportive and inspiring podcast so that all in the medically challenged community know…You are Not Alone. Co-host Beth Ourisman Glassman is a third-generation Washingtonian with a deep interest in health care. She is a trustee of the Sibley Memorial Hospital Foundation in Washington and co-chair of A Woman’s Journey for the National Capital Area, the 27-year-old women’s health program established by Johns Hopkins Medicine. Beth is passionate about empowering women to make the best health care decisions for themselves and their families. Having experienced health challenges herself, she believes that the power of connection and sharing one’s own story is instrumental to the healing process. As co-host of the podcast “It Happened to Me,” she shares her ordeals, interviews guests who have experienced similar struggles, and reveals how to overcome and cope with some of the most difficult health challenges.Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor’s of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master’s of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Connecticut. On This Episode We Discuss:Idea of launching a podcastMotivation behind IHTMChoosing “It Happened To Me” Podcast titleInviting Beth to join as co-hostBeth and Cathy’s rare diseasesFuture interviews/topics on upcoming episodes 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

Trailer: It Happened To Me

We are thrilled to announce our brand new podcast, It Happened To Me, I’m not alone and neither are you. This show explores rare diseases and medical challenges. Our mission is to support you, our listeners, by creating community as you confront the toughest challenges in life. We aspire to help you overcome limitations and live a full and satisfying life. Our hosts are Cathy Gildenhorn and Beth Glassman who draw from their own health challenges while interviewing guests to capture their stories and expertise. Here’s how you can support our podcast launch: Rate & Review the podcast on Apple, Spotify, or wherever you listen. This truly helps us climb the charts and allow others to find the show. After you do that send it to a friend who you think will enjoy our podcast. And good news, you don’t have to wait long for the show, we are launching next week! Hit that subscribe button so you don’t miss it. For more information about the podcast please visit ItHappenedToMePod.com. Any guest suggestions, comments, questions, ideas, and feedback for the show, can be sent into ItHappenedToMePod@gmail.com. There is also a contact form on the website if that is easier for you.Our hosts are Cathy Gildenhorn and Beth Glassman. Our co-producers are Steve Holsonback, and myself, Kira Dineen, of DNA Today.