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

#67 Exploring Clinical Trials in Latin America with Julio G. Martinez-Clark

Join us as we delve into the evolving landscape of clinical trials in Latin America with Julio G. Martinez-Clark, CEO of BioAccess. Discover how his company is pioneering pathways for medtech innovators and shaping the future of medical device innovation in emerging markets.
 
Bioaccess® is a trailblazing company that’s helped over 100 Medtech innovators navigate global clinical trials, and he currently serves as Ambassador of International Accrediting Organization for Clinical Research in the Americas. With a career that spans healthcare infrastructure, telecommunications, and regulatory strategy, Julio is a leading voice in the field of medical device innovation in emerging markets.
 
From his early days at Johns Hopkins Hospital to his current role in shaping ethical and efficient trial systems across Latin America, Julio’s mission is clear: to expand access to high-quality research for patients and sponsors alike. He’s also the host of the Global Trial Accelerators™ podcast, where he dives into trends in Medtech, Biopharma, Radiopharma and clinical trial innovation.
 
We unpack what makes Latin America a strategic region for clinical trials, especially for rare diseases, and explore how improving trial access can speed innovation, and change lives.
 
Episode Discussion Topics: 
 
Introduction to Julio G. Martinez-Clark and his role at BioAccess.
The clinical trial landscape in Latin America and its strategic importance.
Julio's career journey from Johns Hopkins Hospital to BioAccess.
The impact of cultural competence and community engagement on clinical trials.
Challenges and solutions for conducting clinical trials during the pandemic.
The role of artificial intelligence and digital tools in clinical trials.
The future of clinical research in Latin America, including radiopharmaceuticals and theranostics.
The importance of international standards and certifications for clinical research sites.
Success stories and innovative approaches in clinical trials.
Julio's podcast, Global Trial Innovators, and its focus on industry education.
During the episode a blog post on bioaccess’ website was referenced that highlights academic papers that talk about the higher recruitment and retention rates in Latin America, here it is: https://www.bioaccessla.com/blog/the-latin-american-advantage-why-clinical-trial-recruitment-and-retention-outpace-the-us-and-europe
 
Connect With Us:
 
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. 

#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed

In this deeply moving episode of It Happened To Me, we sit down with Elizabeth Ansell, founder of #NotJustFatigue, a nonprofit initiative dedicated to raising awareness about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is a condition that is vastly under diagnosed, possibly 90% which would mean it may affect up to 9 million people. 
 
Elizabeth’s life changed dramatically as a young adult when she developed ME/CFS—a complex, debilitating condition often triggered by infection. Since 2016, she has been bed-bound, living with severe fatigue, cognitive impairment, and post-exertional malaise. Yet, from her bed, she has become a powerful voice for change.
 
Through #NotJustFatigue, Elizabeth educates both the public and medical professionals about this misunderstood illness, challenging harmful myths and confronting the stigma that patients face. In this episode, she opens up about her own diagnostic odyssey, the emotional and physical toll of the disease, and the resilience it takes to advocate while living with severe limitations. 
 
What You’ll Learn in This Episode:
 
Elizabeth’s journey to an ME/CFS diagnosis and how it changed her life
The reality of living bed-bound for nearly a decade
Why post-exertional malaise is a hallmark—and often misunderstood—symptom
How #NotJustFatigue is changing public perception and medical understanding
The connection between ME/CFS and Long COVID
Strategies for supporting someone living with ME/CFS
The role of storytelling in advocacy and awareness
Myths and misconceptions that harm patients
The emotional toll of medical gaslighting
Hopes for the future of ME/CFS research and treatment
More About Our Guest:
Elizabeth Ansell, founder of #NotJustFatigue, is an advocate, storyteller, and changemaker for the ME/CFS community. A graduate of the University of Pennsylvania, she has a background in literature and TV production. Bed-bound since 2016, Elizabeth uses her lived experience and creative skills to educate others about ME/CFS, dismantle stigma, and build community for those navigating the same invisible illness.
 
Here is the visual historical timeline that Elizabeth mentioned during the episode. She also recommends watching #NotJustFatigue’s 15 minute short film about the condition. 
 
An update since we recorded with Elizabeth….
 
In a rare bipartisan move earlier this month (August 2025), the Senate Labor-HHS FY26 Appropriations Report delivered two major wins for the chronic illness community:
Formally recognized ME/CFS within the RECOVER Initiative for Long COVID
Directed NIH to implement the ME/CFS Research Roadmap within 180 days
 
This is a long-awaited breakthrough for millions of Americans with ME/CFS, a post-viral disease that has no FDA-approved treatment and receives just $13M in funding annually, despite being more common than Multiple Sclerosis. Advocates are calling this a major step forward in pushing NIH toward accountability and treatments.
 
Connect With Us:  
 
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. 

#65 Invisible Swells: Surviving with Hereditary Angioedema Type III

In this episode of It Happened To Me, we sit down with the multi-talented Sally Pirie, a comic artist, painter, professor, toymaker, and rare disease advocate, to explore her journey living with Hereditary Angioedema Type III (HAE-3). Sally’s path to diagnosis was long, painful, and emotionally fraught, culminating in a deeply moving feature in The New York Times that helped shine a national spotlight on HAE and the broader diagnostic odyssey that so many rare disease patients face.
 
Sally opens up about the unpredictable flares of HAE, the mental toll of being misunderstood by the medical system, and how she channels her experiences into art, humor, and education. 
 
She is also Professor of Child and Family Studies and Director and Master Artist at the Comics-Based Research Lab at the University of Massachusetts, Amherst. An award-winning newspaper cartoonist and an anthropologist of childhood and infancy, she received her PhD from the University of Colorado, Boulder and is a graduate of Punahou School and Grinnell College. Her areas of expertise include comics-based research methods, ethnographic research and transgender childhoods. She was the 2020 Distinguished Visiting Professor of Liberal Arts at the University of Minnesota, Morris and the 2021 recipient of the Grinnell College Alumni Award in recognition of her lifetime of public service. She once went to New Year’s Eve fireworks dressed as a huge blue pufferfish because why not. Life should be suffused with art and joy. 
 
Topics We Cover:
What is Hereditary Angioedema Type III, and how is it different from other forms?
Sally’s early symptoms, misdiagnoses, and emotional health during the diagnostic odyssey
Her daughter’s experience with HAE while taking gender-affirming estrogen and being the only documented transgender person with the condition 
The significance of her New York Times feature 
What it feels like to experience an HAE attack and how deadly it can be
Navigating academia and advocacy while managing a chronic illness
How comics and illustration became a therapeutic and educational tool
Invisible illness misconceptions and systemic barriers in rare disease care
The importance of laughter, joy, and resilience in the face of adversity
Advice for undiagnosed patients and caregivers supporting loved ones with rare conditions
You can learn more about Sally on her website. She also highly recommends the Hereditary Angioedema Association for resources. And be sure to read her feature in the New York Times 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. 

#64 Challenging the Label: Living and Thriving with Trisomy 18 Part 2

In this second part of our interview with Sartia Edwards, we continue a conversation about her son Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.
 
Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.
 
Topics Covered:
Navigating medical decision-making and advocating for hope
Mental health support for caregivers of medically complex children
Public policy changes needed in rare disease healthcare
The power of patient-centered storytelling through Sarita’s Being Rare Podcast
Advice and encouragement for families receiving a Trisomy 18 diagnosis
 
Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita’s own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen’s on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.
 
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. 

#63 Redefining “Incompatible with Life”: A Mother’s Mission for Trisomy 18 Awareness Part 1

In this powerful episode of It Happened To Me, co-hosts Cathy and Beth sit down with Sarita Edwards, an award-winning advocate, rare disease leader, and mother to Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.
 
Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.
 
Topics Covered:
What is Trisomy 18 and how it affects the body
Elijah’s diagnosis and how it shaped Sarita’s life and career
The challenges of hearing “incompatible with life” as a parent
Misconceptions about children living with Trisomy 18
Elijah’s involvement in Special Olympics and celebrating milestones
The origin and mission of the E.WE Foundation
 
Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita’s own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen’s on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more. 
 
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.

#62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music Education

In this inspiring episode, we’re exploring the powerful intersection of music and accessibility with three incredible guests: Dr. Bradley Black, a world-renowned pediatric ophthalmologist and founder of the Vision Through Music program, Makayla, a passionate young musician and student in the program, and Maykaya’s mother Joann. 
Dr. Bradley Black (he/him) practiced pediatric ophthalmology and strabismus in Baton Rouge, Louisiana. He is past president of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS) and the Louisiana Academy of Eye Physicians and Surgeons (LAEPS). He has served on the boards of directors of AAPOS, the Children’s Eye Foundation, the Smith-Kettlewell Eye Research Institute, and LAEPS. He received the Honor Award, Senior Honor Award, and the Lifetime Achievement Award from AAPOS and the Achievement Award, Secretariat Award, and the Outstanding Advocate Award from the American Academy of Ophthalmology. He was elected to the American Ophthalmological Society. In 2024, he received the Parks Silver Medal, the highest honor awarded by AAPOS and CEF-AAPOS. Dr. Black is active in international ophthalmology. He served on the Orbis International Cybersight Medical Advisory Board and has performed and taught pediatric eye surgery in more than thirty countries. 
One of his greatest professional achievements to date is founding the Vision Through Music program of the Children's Eye Foundation, which seeks to increase the number of music teachers who work with blind and partially sighted children nationwide. He and his wife, Cindy, have two children and two grandchildren. In his leisure time, you can often find Dr. Black sailing the Gulf of Mexico on his thirty-five-foot sloop.
 
Makayla Alger (she/her) is a passionate student of the Children’s Eye Foundation’s Vision Through Music Program (VTM). From an early age, she found joy in singing and playing on her sister’s keyboard. She is currently learning violin and will soon begin voice lessons through the VTM program. Makayla lives with a mutation to the TUBB4B gene, which has led to degenerative vision and bilateral sensorineural hearing loss. Over time, she has lost night vision, experienced a decrease in peripheral vision, and developed nystagmus. Her mother, Joann, vividly remembers taking Makayla to a pediatric ophthalmologist, who determined she would need glasses for life. Initially overwhelmed and unsure whether her young daughter would keep them on, Joann recalls when Makayla looked up at her parents and with a soft voice appreciatively said, “thank you.” From that moment, she never took her glasses off. Joann says the family has gotten creative to make things more accessible at home. Beyond her love of music, Makayla is also the author of “The Way I See It”, a story following Elena, a visually and hearing-impaired red fox who navigates Vermont’s scenic trails using her heightened senses. Along her journey, Elena meets many woodland creatures and teaches them important lessons about awareness, kindness, and understanding. Makayla and her mom Joann hope to raise awareness about TUBB4B genetic testing, as well as encourage more research into its progression and ultimately a cure.
Whether you’re a parent, educator, healthcare provider, or music lover, this conversation will show you just how transformative inclusive programming can be.
Mentioned in this episode:
Vision Through Music program: VisionThroughMusic.org or email contact@visionthroughmusic.org
Academy of Music for the Blind: ouramb.org
Makayla’s book, The Way I See It available here on Amazon.
Girl Scouts of America: GirlScouts.org 
Summer Camp IN-SIGHT: in-sight.org/camp
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. 
 

#61 How Jack’s Basket Is Changing the Down Syndrome Diagnosis Story

In this heartfelt episode we welcome guest Carissa Carroll, M.Ed., Founder and Executive Director of Jack’s Basket, a nonprofit that has transformed the way families experience a Down syndrome diagnosis.
A former educator with degrees from Bethel University and the University of Minnesota, Carissa taught at both the elementary and collegiate levels. But her life—and her mission—changed forever after the birth of her son Jack, and an abrupt, assumptive diagnosis experience. Determined to ensure future families would feel supported, celebrated, and connected, Carissa launched Jack’s Basket in Jack’s honor.
Since then, over 11,000 families in 55 countries have received baskets filled with love, resources, and messages of hope. Carissa now leads her organization full-time and presents to healthcare professionals nationwide on how to deliver diagnoses without bias, while also engaging donors and volunteers who help carry out Jack’s Basket’s powerful mission.
Topics Covered:
What is Down syndrome and how it affects individuals and families
Carissa’s personal story of receiving Jack’s diagnosis and the emotional impact
The inspiration behind launching Jack’s Basket
What’s inside a welcome basket and how it brings comfort to new families
Carissa’s advocacy for bias-free diagnosis delivery in medical settings
Common misconceptions about Down syndrome
Why early connection and community support are crucial
Memorable moments from Jack’s life and the families they’ve served
Advice for new parents, healthcare providers, and loved ones welcoming a baby with Down syndrome
Media highlights, including Carissa’s appearance on The Kelly Clarkson Show and DNA Today podcast (Episode #333)
Jack’s Basket Resources:
Jack’s Basket Website
Request a Basket
Genetic Counseling Webinar: "Communicating Unexpected News"
 
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.

#60 CRISPR, Community, and Courage: A Deep Dive into Sickle Cell Advocacy

In this powerful episode of It Happened To Me, co-hosts Cathy Gildenhorn and Beth Glassman are joined by two fierce patient advocates and changemakers in the sickle cell disease community: Wunmi Bakare and Dima Hendricks. Both women are living with sickle cell disease and have transformed their lived experiences into platforms for storytelling, education, and change.
 
They are also the co-hosts of #ThroughTheGenes, a podcast that launched last year on World Sickle Cell Day (June 19, 2024). The show explores gene therapy and other innovative treatments for sickle cell disease while centering patient voices. With a second season debuting again on June 19th (exactly a month from today!), Wunmi and Dima continue to bring much-needed visibility to a condition that is often misunderstood and underfunded. And they will be joined by a new dynamic host, Christelle Salomon!
 
Topics Discussed:
What is sickle cell disease and how it impacts daily life
The emotional and physical toll of living with a chronic, invisible illness
Medical gaslighting and how to advocate for yourself
Finding community and realizing you’re not alone
Blending identity, advocacy, and creativity in the public eye
Insights into gene therapy, including CRISPR technology and treatment considerations
Health equity and why access to care must be a priority in the sickle cell space
The power of patient-centered storytelling through #ThroughTheGenes podcast
 
During the episode Beth referenced a previous episode with someone who has pancreatic cancer, you can listen to Leslie Waldman’s full interview on Episode 25 here. 
 
Catch up with all of season 1 of #ThroughTheGenes podcast right now, before season 2 launches on World Sickle Cell Day on June 19th, 2025. 
 
Both podcasts, It Happened To Me and #ThroughTheGenes are part of Gene Pool Media, the science podcast network. Be sure to check out all these science shows, many of which discuss medical challenges. 
 
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. 

#59 From Diagnosis to Memoir: Laura Kieger’s Mission to Share Her Family’s FAP Story

In this powerful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn are joined by author, advocate, and healthcare leader Laura Kieger, who shares her family’s deeply personal journey with FAP (Familial Adenomatous Polyposis), a rare genetic condition that significantly increases the risk of colorectal and other cancers.
Laura’s memoir, Summer’s Complaint, chronicles the emotional and medical challenges her family has faced across generations, from diagnosis and genetic testing to coping with loss and finding resilience. As someone who tested negative for the familial mutation herself, Laura also opens up about "survivor’s guilt", the burden of watching loved ones endure cancer, and how her work in healthcare and leadership has informed her approach to caregiving and advocacy.
Whether you're living with a hereditary cancer condition, supporting someone who is, or simply seeking to understand the human side of genetic risk, this episode offers insight, education, and compassion.
Topics Covered:
What FAP is and how it differs from other hereditary cancer conditions
Laura’s family’s diagnosis journey and how it shaped their approach to screening and prevention
The emotional experience of receiving a negative genetic test result when others in your family test positive
The value of genetic counseling and early detection
Misconceptions about FAP and what patients and families should really know
How storytelling can raise awareness and build advocacy for rare diseases
Highlights from Laura’s memoir, Summer’s Complaint, and what she hopes readers take away
Laura Kieger is a healthcare human resources consultant, leadership coach, and author of Summer’s Complaint. With decades of experience improving patient and employee experiences in healthcare settings, Laura brings both professional and personal insight to the conversation around rare diseases and inherited cancer risk. She’s also a passionate advocate and speaker for organizations like the Ronald McDonald House and Care Partners.
 
Be sure to purchase your own copy of Laura’s memoir Summer’s Complaint; all proceeds go to continuing education credits for healthcare providers about hereditary cancer syndromes. During the episode Laura also mentioned a study about green bananas here and a private Facebook support group 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. 
 

#58 Living Deafblind: Carrie Francis’ Resilience After 5th Degree Facial Cleft

Hosts Beth and Cathy sit down with Carrie Francis, a university student and passionate advocate for the blind, visually impaired, and deafblind communities. Carrie, born with a rare 5th-degree facial cleft, has overcome extraordinary medical challenges, including severe blindness and hearing impairment. Despite being told she wouldn’t survive beyond her first week of life, Carrie has defied the odds and is now pursuing a Bachelor’s degree in Psychology while dedicating her life to advocacy and community support.
 
Carrie shares her journey from childhood surgeries and speech therapy to navigating life as a deafblind person. She opens up about the misconceptions surrounding the deafblind community, the resilience required to thrive despite medical challenges, and the support systems that have helped her along the way.
 
This episode is a testament to the power of determination, the importance of advocacy, and the strength it takes to rewrite your story against all odds.
 
Key Topics Discussed:
What is a cleft palate, and how does it differ from a cleft lip?
The medical and emotional challenges of living with a 5th-degree facial cleft.
Navigating life as a deafblind person: adaptations, family support, and advocacy.
Overcoming misconceptions about the deafblind community.
Carrie's journey to pursuing a degree in psychology and her advice for students with disabilities.
Resilience and the factors that helped Carrie defy her initial prognosis.
Impact of the Lions Foundation in Canada
 
Connect with Us:
 
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.