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.

• 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.

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.

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 ItHappenedToMePod@gmail.com.