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

#25 Pancreatic Cancer with Patient Advocate Leslie Waldman

Pancreatic cancer occurs when a cell in the pancreas is damaged, causing the malignant or cancer cell to form in the tissue of the pancreas.  The pancreas is a gland about 6 inches long and is shaped like thin pear lying on its side.  The pancreas lies between the stomach and the spine.  
 
The risk of developing pancreatic cancer increases with age, with about ⅔ of patients being diagnosed at age 65 or older.  Slightly more men than women are affected.  
 
Cigarette smoking is one of the biggest risk factors. Other risk factors include: 
Being overweight
Personal history of diabetes and
Family history of pancreatic cancer or pancreatitis
 
Like most cancers, early detection is critical. Survival rates are impacted by tumor size and whether the cancer has spread to other organs.
 
In this episode we are joined by Leslie Waldman, who has a personal diagnosis of pancreatic cancer, which she has lived with for 10 years. Leslie Waldman is director of Consumer and Physician Engagement at Johns Hopkins Medicine. During the last four decades, he has served Johns Hopkins in many capacities including director of strategic marketing, director of competitive strategy for Johns Hopkins Medicine and as director of public affairs for the Johns Hopkins University School of Public Health.
 
Throughout her career, she has blended strategy planning and marketing, public affairs and consumer health education to affect change and motivate consumers towards healthier living. Resulting programs have included community-based screening programs for Tay-Sachs disease and lead poisoning; the award-winning health portfolio, A Woman’s Journey; and strategic marketing programs for women’s health, many clinical programs and recruitment of volunteers for clinical trials The Association of American Medical Colleges has honored her work for the digital program, COVID -19: One Year Later; re branding Johns Hopkin Medicine, marketing the Johns Hopkins Breast Center, advertising during open enrollment, the publication of Estrogen Replacement Therapy: The Johns Hopkins Guide to Making an Informed Decision; and marketing for the Johns Hopkins Asthma and Allergy Center.
 
Ms. Waldman has a masters in science in health education from the Johns Hopkins University Bloomberg School of Public Health and a BA from the Newhouse School of Communications and the College of Liberal Arts at Syracuse university.
 
Check out “A Woman’s Journey: Healthy Insights That Matter” on Apple Podcast here. There is also an archive here. We also encourage you to explore the resources offered by PanCan and Lust Garden. You can also reference the NCCN guidelines for pancreatic cancer 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.

#24 Neuro-Ophthalmic Disorders with Dr. Andrew Carey

We are honored to have Dr. Andrew Carey as a guest on this episode of on It Happened To Me. As a disclosure, Dr. Carey is our co-host Cathy Gildenhorn’s Doctor who diagnosed her rare disease, Wolfram Syndrome. 
 
Andrew R. Carey, MD (he/him) is an Assistant Professor of Ophthalmology in the division of Neuro-Ophthalmology at the Wilmer Eye Institute. He specializes in neuro-ophthalmic disorders such as optic neuritis, uveitis related papillitis, ischemic & hereditary optic neuropathies as well as diseases of the retina, including age-related macular degeneration, diabetic retinopathy, toxic retinopathies and inherited disorders of the retina such as retinitis pigmentosa.
 
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. 
 

#23 Autoimmune Conditions with Dr. Colby Kash

Dr. Colby Kash is featured on this episode of “It Happened To Me”. Dr. Kash is the author of The Autoimmune Plague: How to Regain Sovereignty Over Your Body and Life.  
He is an author who has pivoted out of clinical practice and is dedicated to improving health through modern technologies and evolutionary biology. Dr. Kash is also a lecturer on wellness and a co-founder of biotechnology companies and an investment group. 
Dr. Kash has experienced his own set of Medical Challenges. Crippling digestive issues that advanced to Crohn’s disease, as well as psoriasis and inflammatory arthritis. Determined to find the root causes, he developed a blueprint to combat the wide range of psychological, emotional, physical and environmental stress factors that contribute to autoimmune diseases. In the end, this blueprint gave HIM his health back. He hopes to share his approach with others suffering the debilitating effects of autoimmune disease. 
Dr. Kash has a Doctor of Chiropractic, a Masters in Applied Clinical Nutrition and several certifications reflecting his passion within health, wellness and longevity. 
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. 

#22 Papillary Thyroid Cancer with Carly Flumer

Carly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27 and again at 31. While being diagnosed with cancer at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy. She received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy. 
 
Resources from the episode…
Thyca
Elephants and Tea
Cactus Cancer Society
National Cancer Institute
GRYT Health
American Cancer Society
 
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. 
 

#21 Wolfram Syndrome with Parent Pat Gibilisco

We are releasing this episode in honor of Wolfram Syndrome Global Awareness Day which is celebrated on October 1st. The Wolfram Syndrome community worldwide is working to increase awareness and ultimately find a cure for Wolfram Syndrome. To learn more about Wolfram you can also listen to Episodes 3, 5, 9, and 18 of It Happened To Me.
 
Pat Gibilisco is Patient Advocacy Liaison for the Snow Foundation for Wolfram Syndrome research. Pat is Co-Founder of the first Wolfram Syndrome Website and Family Support Group, which launched in 1998 when her 12-year-old daughter, Lauren, was first diagnosed with Wolfram Syndrome. In 2021, Lauren passed in her mid-30s. 
 
In the 90s, Pat contacted Dr. Timothy Barrett, the only known doctor affiliated with this disease, and with Dr. Barrett’s help she was introduced to other Wolfram families. In 2000, Pat contacted the late Dr. Alan Permutt who discovered the WFS1, Wolfram gene. Pat was instrumental in getting Dr. Permutt to Washington University in St Louis. Dr. Alan Permutt conducted the first Wolfram syndrome research clinic, which included Lauren and six other patients in 2010.
 
Pat is the administrator for the Wolfram Syndrome family private Facebook page. She is passionate about educating and supporting patients, families and caregivers affected by Wolfram syndrome. She offers valuable insight, and resources and connects others who live with this rare disease. She is committed to growing the patient advocacy community, which currently includes over 370 families. Pat is and Lauren was, a strong advocate for Wolfram Syndrome and have spoken at several Wolfram Syndrome fundraisers to help raise money for research and ultimately a cure. 
 
In this episode we discuss Wolfram Syndrome, a rare recessive genetic condition. Wolfram Syndrome is difficult to diagnose but symptoms include diabetes, optic nerve atrophy, vision loss, deafness, loss of taste and smell, and urinary and bladder dysfunction. Our co-host, Cathy Gildenhorn,  was diagnosed with a mild, adult onset variant of this neuro degenerative 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. 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. 
 

#20 Familial Dysautonomia Foundation

In this episode of It Happened To Me we are learning about the genetic conditions Familial Dysautonomia with three lovely guests: Lanie Etkind, Rita Taryan, and Keshi Taryan-Kigel. 
 
Lanie Etkind was appointed Executive Director of the Familial Dysautonomia Foundation in 2017. Lanie's professional background has included fundraising roles in both healthcare and the performing arts. Lanie recently completed a Certificate program in NonProfit Leadership in cooperation with Northwestern University.
 
Rita Taryan and her daughter, Keshi Taryan-Kigel, also join the show. Keshi is a Familial Dysautonomia (or FD) patient in her early 30s and she and her mom will provide a personal perspective about living with and managing the symptoms of FD. 
 
Learn more on Familial Dysautonomia Foundation’s website. 
 
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 logo 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. 

#19 Pierre Robin Syndrome with Corinne Merlino

Corinne Merlino was born with Pierre Robin Syndrome, a rare congenital birth defect that affects craniofacial development. Navigating life as a patient from a young age sparked her passion for science, medicine, and advocacy, and ultimately inspired her to pursue a career in genetic counseling.
 
Corinne currently works as a clinical research coordinator for -The Palliative and Advanced Illness Research- or (PAIR) Center- at The University of Pennsylvania. There she supports multiple studies focused on improving the effectiveness and efficiency of specialty palliative care services for seriously ill patients. 
 
With our Executive Producer, Kira Dineen, Corinne also serves as Communications Lead for the DNA Today Podcast for over 3 years. Kira is also joining us today as a guest host for this conversation! 
 
In 2020, Corinne received her B.S. in Biology and Healthcare Ethics from Saint Joseph's University. Corinne is currently a graduate student in genetic counseling at the University of Pennsylvania.
 
During the episode we mentioned Philly Phaces and the book and film Wonder. 
 
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. 

#18 Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum

In this episode we continue our conversation with Tamra Blum. Tamara was on the last episode (Episode #17) of It Happened To Me where we discussed mental health. Tamara shared her expertise as a licensed clinical social worker to help listeners develop a mental health toolkit and answered several FAQs about therapy and more. 
 
Tamara is a Licensed Clinical Social Worker (LCSW) in St. Louis, Missouri with a  MSW from the Brown School at Washington University. She has worked with grieving families, on college campuses, and as a graduate and post-graduate level supervisor. Tamara has also served as a consultant to the National Center for Deaf-Blindness and  has been providing psychotherapy and mental healthcare in her private practice serving teens, adults, couples and families since 2012.
 
In this episode we are discussing Tamara’s role as the parent of a child with an ultra rare subtype of Wolfram Syndrome. Tamara is the proud single mom of 6 children. Her 5 surviving children include 26-year-old Andrew who has the Hattersley-Urano subtype of Wolfram Syndrome. She is an ally and an advocate at work and home and has taught her children to be the same. 
 
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 logo 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. 

#17 Mental Health Help with Social Worker Tamara Blum

In this episode our guest is Tamara Blum. Tamara is a Licensed Clinical Social Worker (LCSW) in St. Louis, Missouri with a  MSW from the Brown School at Washington University. She has worked with grieving families, on college campuses, and as a graduate and post-graduate level supervisor. Tamara has also served as a consultant to the National Center for Deaf-Blindness and  has been providing psychotherapy and mental healthcare in her private practice serving teens, adults, couples, and families since 2012.
 
Tamara is the proud single mom of 6 children. Her 5 surviving children includes 26-year-old Andrew who has the very rare Hattersley-Urano subtype of Wolfram Syndrome. She is an ally and an advocate at work and home and has taught her children to be the same. 
 
Tamara will appear as a guest on our next episode as well. In this episode we discuss how Tamara utilizes her training as a Licensed Clinical Social Worker (LCSW), to help listeners develop a mental health toolkit. 
 
During the episode Tamara recommended Psychology Today as a resource to find a mental health provider. She also mentioned people in the United States can call 988 which is a free 24/7 hotline for people experiencing a mental health emergency or need help in the moment. 
 
The second half of our conversation with Tamara will be featured on our next episode of It Happened To Me which will be released on August 21st. We will focus on Tamara’s role as the parent of a child with a nano rare subtype of Wolfram Syndrome. 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 logo 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. 

#16 ALS with Brooke Eby

At the age of 29, Brooke received a devastating diagnosis. After four years of confusing symptoms in her leg, Brooke Eby was diagnosed with ALS in March 2022. She hopes to spread awareness of amyotrophic lateral sclerosis (ALS) to as many people as possible and laugh along the way. Brooke has appeared as a guest on the Today Show, interviewed by Savannah Guthrie. You can also read the essay she wrote for the Today Show.
 
Brooke, thank you so much for sharing your story with us. Listeners, you can follow along with her journey across all social media platforms at @LimpBroozkit (TikTok, Instagram, etc.).
 
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.