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

In this episode of It Happened To Me, hosts Cathy and Beth sit down with Zachary Ship, a remarkable individual who has faced incredible health challenges. This is part one of the conversation where Zach shares the powerful story of how his mother, Shari, donated a kidney to save his life. Shari was a guest on our last episode of It Happened To Me (#43). At just 19 years old, Zach was diagnosed with end-stage renal failure due to an autoimmune disease. He takes us through the emotional rollercoaster of receiving a life-saving transplant from his mother while navigating the challenges of young adulthood.

From the first signs of illness as a teenager to his recovery after the transplant, Zach’s journey is one of resilience, family strength, and determination. Tune in to hear how Zach’s life was forever changed and how he adapted after receiving the gift of life from his mom.

Guest Bio:

Zach Ship is the Director within the Finance organization at Harry’s Inc. A graduate of NYU’s Stern School of Business, Zach was diagnosed with end-stage renal failure during his freshman year of college, resulting in a kidney transplant from his mother. Zach’s incredible journey to recovery is a testament to his strength and his family’s support.

• The First Signs of Trouble: Zach shares how a routine urine test for sports led to the discovery of a serious autoimmune disease that attacked his kidneys, forever altering the course of his life.

Please help support Zach by making a donation for his team’s travel funds so they can compete in 2024 World Baseball Softball Confederation’s (WBSC) Blind Baseball International Cup taking place just outside of London. The United States Blind Baseball Association (USBBA) is a charitable, non-profit corporation. USBBA is dedicated to the development, management, regulation and promotion of their mixed gender adaptive sport of Blind Baseball.

If you are able to assist us in our 2024 fundraising efforts, please make checks payable to U.S. Blind Baseball Association, and mail to the address below or use these QR codes to send money through Venmo or PayPal. 

U.S. Blind Baseball Association

Another resource we want to highlight is organdonor.gov, where you can learn more about organ donation.

Check out the documentary that Zach will be featured in here. If you are still feeling generous you can also consider donating to the documentary’s funding here! 

Stay tuned for the next new episode of “It Happened To Me” where we continue our conversation with Zach to learn about his vision loss and adapting to this disability as an adult! 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 [email protected]. 

Shari Ship's story is a remarkable tale of a mother's unwavering love and sacrifice for her son. As a widow and caregiver to her 97-year-old mother, Shari selflessly donated a kidney to her son Zachary, who was diagnosed with a rare autoimmune disease called membranous nephropathy that attacked his kidneys. Despite the challenges of caring for her ailing husband who passed away from lung cancer, Shari remained steadfast in her commitment to her family.

When Zachary's condition worsened, leading to end-stage renal failure, Shari made the courageous decision to become a living kidney donor for her son. With the support of her 85-year-old mother and the compassionate medical team, Shari underwent a rigorous testing process, including a psychiatric evaluation, to ensure her eligibility as a donor.

The transplant surgery was a success, despite a last-minute scare, and Zachary's life was saved. Shari endured the pain and recovery process with determination, fueled by the immense love for her son. Zachary's immediate improvement, from "drowning in his own fluid" to urinating normally, was a testament to the transformative power of this selfless act.

Shari’s inspiring story highlights the strength of a mother's love, the resilience of the human spirit, and the profound impact of organ donation in saving lives. Her unwavering support and her son's remarkable recovery serve as a beacon of hope for families facing similar challenges.

Key Lessons

• Shari Ship's selfless act of donating a kidney to her son Zachary, who later became visually impaired.

• Shari's courageous decision to donate her own kidney when Zachary's condition worsened, demonstrating her unwavering commitment to her son's well-being.

• The family's resilience and the power of a parent's love, as evidenced by Zachary being described as "indomitable" despite the challenges they faced.

Please help support Shari’s son Zachary by making a donation for his team’s travel funds so they can compete in 2024 World Baseball Softball Confederation’s (WBSC) Blind Baseball International Cup taking place just outside of London. The United States Blind Baseball Association (USBBA) is a charitable, non-profit corporation. USBBA is dedicated to the development, management, regulation and promotion of our mixed gender adaptive sport of Blind Baseball.

If you are able to assist us in our 2024 fundraising efforts, please make checks payable to U.S. Blind Baseball Association, and mail to the address below or use these QR codes on our website (ithappenedtomepod.com) to send money through Venmo or PayPal. 

U.S. Blind Baseball Association

Another resource we want to highlight is organdonor.gov, where you can learn more about organ donation.

In the next new episode of “It Happened To Me” we interview Shari’s son Zachary about his perspective on the experience about his health issues. 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 [email protected]. 

In this episode of It Happened To Me, hosts Cathy and Beth are joined by Tanita Allen, a resilient advocate for Huntington’s Disease (HD) and the author of the touching memoir, We Exist. Tanita shares her personal journey with HD, from her initial symptoms and challenging diagnostic process to her current role as a self-advocate and member of The HD Community Advisory Board.

Tanita discusses the complexities of living with HD, a condition often described as a combination of Parkinson’s, ALS, and Alzheimer’s. She offers insight into the importance of genetic testing, the impact of environmental factors on her early onset, and the emotional journey of being the first in her family to be diagnosed with this rare genetic condition. Additionally, Tanita shares her five key strategies for maintaining a hopeful disposition in the face of medical challenges.

Tanita Allen is a dedicated advocate for Huntington’s Disease and the author of *We Exist*, a memoir documenting her journey with HD. She holds a Bachelor of Arts in Public Affairs and is a certified paralegal. Tanita's advocacy work is enriched by her extensive experience in customer service and sales. She is a member of The HD Community Advisory Board and has been featured in Forbes, where she discussed the significance of self-advocacy and collaboration.

Key Discussion Points:

• Understanding Huntington’s Disease (HD): Tanita describes HD as a trifecta of Parkinson’s, ALS, and Alzheimer’s. She shares her experiences with the hallmark symptoms and discusses the prevalence of HD in the population.

Please check out Tanita’s book, “We Exist”. You can order a copy directly from her website, tanitaallen.com. Also check out her Forbes article, “Why Self-Advocacy Can Help You Become An Invaluable Collaborator”. 

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 [email protected]. 

“The most charming person I have ever met” is how our host Beth describes the guest in this episode, so you are in for a treat. We have the dynamic, charismatic Colleen Gioffreda! Colleen is the Clinical Operations Program Administrator for the Greenberg Center for Skeletal Dysplasias in the Department of Genetic Medicine at the Johns Hopkins University School of Medicine. She handles patient inquiries, coordinates the Little People of America (LPA) Medical Advisory Board clinics at the national conferences and regionals, provides school/social resources to patients and parents, and also manages budgets and databases. 

In her volunteer life, Colleen is LPA’s Adoption Coordinator, and has helped facilitate the adoptions of over 400 children with dwarfism for the past seventeen years. She is also the Chair of the LPA Conference Management Committee and is a member of LPA’s Medical Advisory Board. 

Colleen is lucky enough to answer to the name of ‘Mom’ to her four children, who also all happen to have achondroplasia, the most common form of dwarfism. She views having achondroplasia as an opportunity, and feels fortunate to have experienced such a unique and rich adventure in life. 

Since our Executive Producer, Kira Dineen, is also a genetic counselor, she joins as a guest host in this episode. 

Episode Highlights:

Understanding Terminology and Accommodations:

• Appropriate terms for individuals with achondroplasia and skeletal dysplasias.

Home Modifications and Misconceptions:

• Recommended home alterations for individuals affected by dwarfism.

Employment and Workplace Challenges:

• Employment roadblocks faced by little people and necessary workplace accommodations.

Career Path and Key Responsibilities:

• Colleen’s journey towards helping the skeletal dysplasia community.

School and Social Resources:

• Providing school and social resources to patients and parents.

Adoption Advocacy:

• Motivations for becoming involved in adoption advocacy.

LPA Conference Management:

• Involvement in the LPA Conference Management Committee and the significance of organizing conferences.

Parental Support:

• Approaching support and resources for parents raising children with achondroplasia.

Community Advocacy and Medical Collaboration:

• Pressing issues within the dwarfism community and advocacy efforts.

Personal and Professional Perspective:

• Influence of personal experience with achondroplasia on professional approach.

Future Hopes and Advice:

• Hopes for the future of care and support for individuals with dwarfism.

Colleen Gioffreda shares invaluable insights into the world of dwarfism, from personal experiences to professional advocacy. Her work with the Greenberg Center and LPA highlights the importance of community, support, and dedicated advocacy for individuals with skeletal dysplasias.

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 [email protected].

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.

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.

Diagnosing and Treating Crohn’s:

• Diagnosis: Typically involves a combination of medical history, physical exams, and specialized tests.

Ryan’s Personal Journey:

• Diagnostic Journey: Insights into how Ryan’s journey with Crohn’s began.

Transition to Pilates:

• Career Decision: How Ryan’s health journey influenced his career in Pilates.

Incorporating Pilates Principles:

• Principles: Concentration, control, core strength, fluidity, precision, and breathing.

Advocacy and Pain Management:

• Alternative Strategies: Advocating for alternatives to opioids, like Pilates and physical therapy.

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 [email protected].

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 [email protected]. 

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

Key Discussion Points:

1. Understanding Stiff Person Syndrome:

• Description and symptoms of SPS

• Her personal experience with SPS and the path to diagnosis

• Current medications and therapies including muscle relaxers, infusions, plasma exchange, physical therapy, and more

• The establishment of the Stiff Person Syndrome Research Foundation

• Partnerships with the Stiff Person Syndrome Center at Johns Hopkins and the Mayo Clinic

• Current state of SPS research and available treatments

• The significance of patient communities in advancing research and providing support

• Additional ways the foundation aids individuals and families affected by SPS

• Encouragement and guidance for those looking to establish foundations or support medical research for rare diseases

• Stories and experiences from the SPS community that have touched Dr. Zier

• Hopes and aspirations for the future of the Stiff Person Syndrome Research Foundation

Closing Remarks:

• Dr. Zier’s final thoughts and gratitude for the opportunity to share her journey

Episode Links:

• Stiff Person Syndrome Research Foundation

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 [email protected]. 

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.

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 [email protected].

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:

1. 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.

1. 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.

1. 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.

1. 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.

1. 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 [email protected]. 

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.

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.