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

• #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 [email protected].   

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• #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 [email protected]. 

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• #57 APOL1-Mediated FSGS: What Families Need to Know, from Diagnosis to Advocacy

  Jaime Albright Henighan shares her family’s journey after two of her sons, Joshua and Jorden, were diagnosed with a rare genetic kidney disease called APOL1-mediated FSGS (Focal Segmental Glomerulosclerosis).   Jaime’s story highlights the importance of early detection, education, and advocacy for families navigating this challenging condition. She discusses her partnership with Nephcure, a patient advocacy organization, and her mission to raise awareness about FSGS, especially among individuals of West African descent, who are at higher risk due to the APOL1 gene mutation.   Topics Covered: What is FSGS?: Understanding APOL1-mediated FSGS and its impact on kidney health. The Family’s Journey: How high blood pressure led to Joshua’s diagnosis, and the shock of discovering Jorden had the same condition. The Role of Genetics: Why individuals of West African descent are at greater risk and the importance of genetic awareness. Early Detection: How identifying symptoms early has helped Jaime’s sons manage their health. Advocacy and Education: Jaime’s work with Nephcure and her efforts to raise awareness globally, including in Ghana. Parenting Through Challenges: Jaime’s emotional journey as a mother and her advice for other parents navigating rare diseases.   Key Moments: Jaime explains how her family discovered FSGS and the challenges they faced in obtaining a diagnosis. Insights into the genetic factors behind APOL1-mediated FSGS and its prevalence in specific populations. Advocacy efforts to educate families and healthcare providers about the disease.   Guest Bio: Jaime is a wife and mother of six. Her family resides in Alpharetta, GA. She is also a Forensic Interviewer and Podcast Producer at Tenderfoot TV. In 2021, her seemingly healthy 17 year old son, Joshua, was randomly diagnosed with high blood pressure. This led to additional testing and a diagnosis of Focal Segmental Glomerulosclerosis (FSGS), a rare genetic kidney disease. Later that year, her 25 year old son, Jorden, was also diagnosed with FSGS. This was shocking to the Albright Henighan family. How could they be at high risk of a disease that they had never heard of? They connected with Nephcure, a patient advocacy organization, for support and resources. They learned that 1 in 8 people of West African descent are at risk of APOL1 mediated FSGS due to a genetic mutation. Thanks to early detection, her sons are stable today but this is a rare outcome for FSGS patients due to a lack of education and barriers in the medical community. They decided to share their story across the United States and even in Ghana. Their goal is to educate and empower others. If caught early, there are medical interventions and clinical research trials that can save native kidneys and lives. There is hope for FSGS patients.   Resources Mentioned: Nephcure Kidney International: Advocacy and support for families affected by kidney diseases. Information on APOL1-mediated FSGS and genetic testing. Tips for recognizing early symptoms of kidney disease.   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 [email protected]. 

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• #56 Navigating Dual Diagnoses: Amy Raskin Shares Parenting Strategies for Diabetes and Celiac

  Guest Amy Raskin shares her experience parenting a child living with type 1 diabetes (T1D) and celiac disease. Amy shares her personal experiences, the challenges her family has faced, and the strategies they’ve developed to support her son Andrew’s health and well-being.   Amy Raskin is a pioneer in global thematic investing and widely respected as a bold thought leader. As the Chief Investment Officer of Chevy Chase Trust since February 1, 2014, she has propelled the firm to a leadership position in thematic investing, a small, but rapidly growing approach to investing that MSCI recently added to its universe of style categories. Under her leadership, Chevy Chase Trust has outperformed its global benchmark in each of the last nine years; it is in the top decile of managers for the last 10 years. Amy is also a monthly guest on CNBC.   Prior to joining Chevy Chase Trust, Amy was Senior Vice President at AllianceBernstein in New York, serving as Director of Research for Thematic Portfolios, Director of Research on Strategic Change, head of U.S. & Global Growth Equity Research and Chief Investment Officer of AB Venture Capital Fund. The Research on Strategic Change team published in-depth research papers on a wide range of thematic investment topics, such as broadband, China, hybrid vehicles, climate change and molecular medicine.   Earlier, she worked as an investment banker at Lehman Brothers and as a research analyst at Donaldson, Lufkin & Jenrette. Amy graduated from the University of Pennsylvania’s School of Engineering and Applied Science with a Bachelor of Science in Engineering. She currently serves on the Boards of UPenn’s Engineering School and of the T1D Fund, which is a venture capital fund focused on finding a cure to Type 1 diabetes.   Topics Covered: Understanding Type 1 Diabetes: What T1D is, how it differs from adult-onset diabetes, and the symptoms to look for. A Family’s Journey: Andrew’s diagnosis, the path to confirmation, and how the family adapted to his needs. Living with Celiac Disease: The symptoms, diagnosis, and how it intersects with managing T1D. Daily Life Adjustments: Modifying the home, navigating school and friendships, and encouraging independence. Sibling Dynamics: How Andrew’s older brother, Jason, has adjusted to the care and attention Andrew requires. Advice for Parents: Amy’s wisdom for families facing T1D, celiac, or other chronic conditions. Key Moments: Amy discusses the emotional and practical aspects of explaining T1D to her children. Insights into managing dual diagnoses of T1D and celiac disease. Strategies for balancing a demanding career with the complexities of parenting a child with chronic health conditions. Resources Mentioned: T1D Fund Camp Sweeney Break Through T1D  Findmeglutenfree.com Hole In The Wall Gang Camp   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 [email protected]. 

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• #55 Growing Up with a Childhood Autoimmune Disease with Beth Glassman

  Co-host Cathy Gildenhorn takes on the interviewer role to explore the personal story of her co-host, Beth Glassman. Beth shares her journey of living with a childhood autoimmune disease, offering insights into her diagnosis, its impact on her early life, and how it shaped her perspective as an adult.   On Episode #54, Beth interviewed Cathy about her journey to parenthood through infertility and adoption. Now, the roles are reversed as Cathy delves into Beth’s experiences, highlighting the challenges, lessons, and resilience that come from growing up with an autoimmune condition called uveitis.    Topics Covered: Diagnosis and Early Understanding: Beth’s initial diagnosis, symptoms, and how her healthcare providers and family explained the condition. Family and Social Dynamics: How her family responded to the diagnosis and whether Beth discussed her condition with friends, teachers, or counselors. Navigating Childhood and Adolescence: The impact of the disease on her education, sports, and ability to drive. Living with an Autoimmune Disease: Beth’s thoughts on the potential for passing the condition to her children and how her vision has changed over time. A Healthy Lifestyle: How her childhood experience influences her approach to health and wellness today. Advice for Parents: Beth’s guidance for parents raising children with health challenges.   Key Moments: Beth describes how her autoimmune disease affected her vision and how she explains it to others. The importance of open communication with family, friends, and educators about living with a chronic condition. Reflections on resilience and the power of support systems during childhood.   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 [email protected]. 

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