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

#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. 

#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.

#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. 

#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.

#34 Bloom Syndrome with The Yasbins

In this episode we have a special discussion lined up on Bloom Syndrome, featuring our guests Melanie and Lorne Yasbin, who will share their family's experience with this rare genetic disorder.
 
Melanie received her J.D. from Villanova School of Law, and a B.A. in Political Communications with a minor in religion from The George Washington University.After working for the Federal government for several years, Melanie joined a private practice where she represents railroads in negotiations with each other and before Federal agencies.Melanie dedicates time to causes and organizations whose missions speak to her. She currently serves on the Boards of the JCC of Greater Baltimore and Krieger Schechter Day School (KSDS). As a member of the KSDS Board she has served as the Chairs for Development and Governance. She is also an active volunteer for the Bloom Syndrome Association.
 
Lorne graduated from Temple University’s School of Dentistry in 2001 as a Doctor of Dental Medicine. He previously attended Penn State, where he received a B.S. in Microbiology. For the last 21 years Lorne has been practicing general dentistry in Frederick, Maryland. In addition to practicing chair side, Lorne is the clinical director for 14 offices in Maryland. Outside of work, Lorne is in his third year of serving on the Board of the Bloom Syndrome Association where he chairs the Community Engagement committee. When he has free time, you can find Lorne trying new restaurants throughout Maryland and Delaware, exercising to work off those meals, and relaxing in Rehoboth Beach, Delaware. 
 
Understanding Bloom Syndrome:
 
Bloom Syndrome is a rare genetic disorder characterized by a range of symptoms, including very short stature, light sensitivity, immune system deficiency, and a heightened risk of developing cancer at a young age. Individuals with Bloom Syndrome may also experience chronic respiratory illnesses, recurrent ear infections, and diabetes. Notably, males may face infertility, while women undergo early menopause and reduced fertility. With only a few hundred documented cases worldwide, Bloom Syndrome presents significant challenges for affected individuals and their families.
 
Interview Highlights:
 
Diagnostic Journey: Melanie and Lorne share insights into their son Brady's diagnostic odyssey, highlighting the challenges they faced in identifying Bloom Syndrome. From noticing early signs to navigating various medical appointments, they provide a firsthand account of their journey.
 
Family Planning and Genetic Counseling: The discussion delves into the impact of Brady's diagnosis on family planning decisions and the role of genetic counseling in providing support and guidance to the Yasbin family.
 
Managing Cancer Risk: Given the heightened risk of cancer associated with Bloom Syndrome, Melanie and Lorne discuss strategies for managing Brady's cancer risk and navigating cancer screenings and treatments.
 
Parenting and Family Dynamics: The conversation also touches on the practical aspects of parenting a child with Bloom Syndrome, including balancing Brady's needs with those of his older brother Noah and making medical appointments a positive experience for Brady.
 
Advocacy and Advice: Melanie and Lorne conclude by offering valuable advice to listeners and sharing their advocacy efforts for individuals with rare diseases like Bloom Syndrome.
 
We extend our heartfelt thanks to Melanie and Lorne for their candid insights into Bloom Syndrome and their unwavering advocacy for rare disease awareness. Their story serves as an inspiration to families facing similar challenges, and we wish them all the best in their journey.
 
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 Tay-Sachs and Grief with Myra Sack

In our last episode (#32), we had the privilege of speaking with Matthew Goldstein, CEO of JScreen, about genetic screening. In this conversation, we are honored to welcome his wife, Myra Sack, a writer, coach, and activist, to share her family's journey and honor the memory of their daughter, Havi, who passed away from Tay-Sachs disease in 2021.
 
Myra Sack is not only a dedicated parent but also a passionate advocate and writer. Her memoir, Fifty-Seven Fridays, is a poignant reflection on navigating life's most painful realities and finding beauty amidst grief. With a background in social impact and bereavement care, Myra's insights offer invaluable guidance for those facing medical challenges and grief.
 
Exploring Tay-Sachs Disease:
- Myra shares insights into Tay-Sachs disease, educating our audience about its impact and challenges faced by individuals with the condition.
 
Preconception Screening Journey:
- We delve into Myra and Matthew's journey with genetic testing and preconception screening, highlighting the importance of awareness and informed decision-making.
 
Coping with Diagnosis:
- Myra reflects on coping with the shock and emotional impact of Havi's Tay-Sachs diagnosis, offering personal insights into their family's journey. 
 
Fifty-Seven Fridays:
- Myra discusses her memoir, Fifty-Seven Fridays, sharing its purpose and the therapeutic process of writing it amidst grief.
 
Learning to Coexist with Grief:
- Myra shares wisdom on learning to coexist with grief, offering invaluable advice and insights for those facing medical challenges and loss.
 
Role of Support Networks:
- We explore the role of organizations like the Courageous Parents Network and E-Motion, Inc., in providing support and resources for grieving individuals and families.
 
Parting Words of Wisdom:
- Myra offers heartfelt advice and parting words of wisdom for our listeners, encouraging resilience and embracing community amidst challenges.
 
As we conclude our conversation with Myra Sack, we are reminded of the resilience of the human spirit and the power of sharing our stories to inspire and uplift others. Join us in honoring Havi's memory and embracing the journey of learning to coexist with grief.
 
Check out Myra’s organization, Emotion, which is for grieving individuals to find community and cope with loss. And of course, her upcoming book, Fifty-Seven Fridays, which consists of memoirs from Matt and Myra, Havi’s diagnosis, and how they celebrated her life. 
 
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.

#32 Tay-Sachs and Carrier Screening with Dr. Matthew Goldstein

A physician-scientist father shares his heartbreaking story of the death of his daughter who was diagnosed with Tay-Sachs disease and how it motivated him to become the CEO of JScreen to prevent this experience in other families. 
Matt Goldstein is a physician-scientist and entrepreneur. He has founded companies, built R&D teams, and led strategy and execution of both pre-clinical research and clinical development. Prior to joining JScreen and Emory University, Matt was a Partner at Related Sciences, a venture creation firm. As an entrepreneur at Third Rock Ventures he spent a decade building and operating Third Rock portfolio companies. He was responsible for building and leading the Immunology program at Tango Therapeutics, the centerpiece of Tango’s strategic multi-billion dollar partnership with Gilead Sciences, Inc. He also served as the development head for Tango’s lead program which entered the clinic in 1H 2022. Matt was a co-founder of Neon Therapeutics leading Translational Medicine and Early Development through completion of their first clinical study and initial public offering. He is a graduate of Swarthmore College and the MD/PhD program at Stanford University, where he pioneered novel cancer immunotherapies in the lab of Ron Levy, MD. He completed his clinical training in Internal Medicine at Harvard Medical School, Brigham & Women’s Hospital. He lives in Boston with his wife, Myra, their second daughter Kaia and son Ezra. His oldest daughter Havi died on January 20th, 2021 of Tay-Sachs disease.
A quick update that during the episode Matthew mentioned there are 4,000 genetic counselors in the USA, this number has now surpassed 5,000.  
During the episode, Matthew recommends the book Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief by Dr. Joanne Cacciatore. 
 
Check out his wife, Myra’s organization, Emotion, which is for grieving individuals to find community and cope with loss. 
 
In our next episode we will chat with Myra about Emotion and her upcoming book, Fifty-Seven Fridays, which consists of memoirs from Matt and Myra, Havi’s diagnosis, and how they celebrated her life. 
 
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. 

#31 Blood Transfusion Therapy with Lori Harada & Carly Newton

In this episode we are learning about blood transfusion therapy with a focus on the patient experience. 
 
Our Executive Producer, Kira Dineen, joins as a co-host since she has a scientific background. 
 
Lori Harada is a registered nurse who also serves as Senior Manager, Technical Excellence Team, for Terumo Blood and Cell Technologies. This is a team of 12 specialists who provide education and support for both the Spectra Optia® Apheresis System and the Trima Accel® Automated Blood Collection System.
 
Lori is no stranger to this industry. She brings with her almost 40 years of nursing experience, 35 of those years in apheresis practice. With her vast knowledge of blood transfusion and related products in the field, Lori provides unique perspective, insight, and understanding to bear for customers, and ultimately patients, every day. Lori is a leader in the industry and has moderated several webinars for American Society for Apheresis (ASFA) and the American Society of Pediatric Hematology/Oncology (ASPHO).
 
During her career, Lori has held positions ranging from apheresis operations and clinical training to sales and marketing. But her true love is education. Seeing a new operator catch the passion of treating patients with apheresis is what brings her the most joy, along with instilling knowledge in her specialists so they share that passion of improving a patient’s life. In her free time, Lori enjoys living in Colorado, where she skis, hikes, and plays golf.
 
Carly Newton is a Registered Nurse at Terumo Blood and Cell Technologies. She has over 15 years of experience helping Healthcare Professionals that treat Sickle Cell Disease patients with Red Blood Cell Exchange all over the globe. Specializing in apheresis treatments, Carly uses that experience to educate Health Care Professionals on the most effective ways to prescribe Red Blood Cell Exchange.
 
By focusing on differentiating the different types of transfusion therapies available to Sickle Cell Disease patients, Carly has been able to put the Registered Nurse degree she earned at The University of South Australia to good use. Carly may spend her days at the Terumo Lakewood campus, but it’s the patients and helping them live their best lives that gets her up in the morning. When she’s not at Terumo, Carly loves spending time in the great outdoors and enjoying everything the Colorado Rockies have to offer.
 
If you want to learn more check out Terumo’s website 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. 

#30 Rare Disease Advocacy with Wes Michael

In honor of Rare Disease Month, we're thrilled to welcome a special guest to our podcast episode: Wes Michael, President, and Founder of Rare Patient Voice. With over two decades of experience in rare and orphan diseases, Wes has dedicated his career to amplifying the voices of patients and caregivers in medical research and development. Join us as we delve into the story behind Rare Patient Voice, its mission, and the invaluable role it plays in shaping the future of healthcare.
 
Before we dive into our conversation with Wes, let's take a moment to acknowledge Rare Disease Month. Did you know that Rare Disease Day falls on the last day of February? It was chosen because February, with its rarest day, the 29th, represents the perfect opportunity to raise awareness and celebrate the strength and resilience of individuals affected by rare diseases.
 
Now, let's turn our attention to our esteemed guest, Wes Michael. With his wealth of experience in market research and healthcare, Wes founded Rare Patient Voice in 1998 with a vision to empower patients and caregivers to make their voices heard in the medical research and development process.
 
Insights into Rare Patient Voice:
- Wes shares the inspiring story behind the creation of Rare Patient Voice and what inspired him to establish this organization.
- We learn how Rare Patient Voice connects patients and caregivers with opportunities to voice their opinions on medical products and services, ensuring their voices are heard and valued.
 
Empowering Patient Voices:
- Wes discusses how Rare Patient Voice ensures diversity and inclusivity in the patient populations it represents in research studies and surveys.
- Insights into the role of patient advocacy groups in amplifying patient voices and collaborating with Rare Patient Voice to drive impactful change.
 
Shaping the Future of Healthcare:
- Wes shares his perspectives on the future of rare disease research, patient engagement, and the invaluable role patient insights play in shaping healthcare advancements.
 
Inspiring Action:
- As we wrap up our conversation, Wes leaves our listeners with a powerful message about the importance of elevating the voices of individuals affected by rare diseases and the profound impact they have on shaping the future of healthcare.
 
Rare Disease Month serves as a poignant reminder of the strength, resilience, and unwavering spirit of individuals in the rare disease community. We extend our heartfelt thanks to Wes Michael for sharing his insights and dedication to empowering patient voices through Rare Patient Voice. Together, let's continue to raise awareness, drive change, and advocate for a brighter future for all those affected by rare diseases.
 
Be sure to check out Rare Patient Voices on their 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 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. 

#29 Exploring the Potential of Artificial Corneas with Dr. Esen Akpek

In this riveting episode of 'It Happened to Me', join co-hosts Cathy Gildenhorn and Beth Glassman as they sit with Dr. Esen Akpek, a leader in corneal and stem cell transplantation. Listen as Dr. Akpek sheds light on emerging research around a groundbreaking synthetic corneal device. This conversation is a beacon of hope for those at high risk of failure from traditional donor corneal transplants and for anyone interested in advancements in ophthalmology.
Discover the intricacies of corneal transplantation, the common eye disorders that affect corneal transparency, and the importance of regular eye check-ups and vaccines in preventing such conditions. Expect a deep dive into the complexities of developing an artificial cornea, the multiple challenges faced, and the potential life-changing impact it holds for individuals around the world.
Led by Dr. Akpek's expertise and research, explore the evolving landscape of corneal transplants, the struggle with rejection rates, and the prospect of an acrylic glass cornea as a more sustainable alternative. Despite the inevitable hurdles in the journey, the promising success rate paints an optimistic future for vision impairment globally.
Be sure to check out Dr. Akpek’s previous interview on Episode #28 where she shared her expertise on dry eye, what it is and what we can do to relieve it.  
Dr. Esen Akpek (she/her) is the Bendann Family Professor of Ophthalmology at The Wilmer Eye Institute, The Johns Hopkins University Medical School. Her area of expertise is in the fields of ocular surface diseases and corneal transplantation. Her current research centers around developing a synthetic corneal device for patients who are at high risk of failure with donor corneal transplantation. She combines the rare characteristics of superior surgical skill and patient empathy. You can learn more about Dr. Akpek on her Johns Hopkins’ listing here. 
We would like to disclose, our co-host Beth Glassman is a patient of Dr. Akpek.  
You can also 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.