Hadley Presents: A Conversation with the Experts
Episode: Visual Hallucinations with Vision Loss: What You Should Know About Charles Bonnet Syndrome
Release Date: May 8, 2025

Introduction

In this enlightening episode of Hadley Presents: A Conversation with the Experts, host Ricky Yenger engages in a profound discussion with Eva Potts, the co-founder and president of Mary Carmel's Light, a nonprofit organization dedicated to supporting individuals affected by Charles Bonnet Syndrome (CBS). The episode delves deep into understanding CBS, the challenges faced by those diagnosed, and the critical support systems necessary for affected individuals and their caregivers.

Understanding Charles Bonnet Syndrome

Eva Potts begins by demystifying Charles Bonnet Syndrome, explaining its prevalence and impact:

"[00:25] Eva Potts: Charles Binet Syndrome is a physiological condition that affects anyone with low vision. It can be low vision brought on by natural causes, accident, injury, disease..."

Eva clarifies that CBS can arise from various causes of vision loss, leading to silent visual hallucinations. These hallucinations range from simple geometric patterns to vivid, distressing visions that can significantly disrupt an individual's daily life.

"[01:09] Eva Potts: These silent visual hallucinations can either be very simple, like geometric patterns, or they can become very nightmarish... They're as clear as a bell in front of them, which is very disturbing because they've had a loss of vision."

A crucial distinction Eva makes is that CBS hallucinations are non-auditory and non-tactile, differentiating them from other psychiatric conditions that involve hallucinations.

Personal Story: Eva's Mother's Experience

Eva shares a heartfelt personal narrative about her mother's struggle with CBS and the subsequent misdiagnosis:

"[04:29] Eva Potts: Our mother lost her vision to glaucoma... she couldn't help but tell us, because she was seeing things that were terrifying for her..."

Her mother initially experienced severe pain and vision loss due to glaucoma, which led to the onset of CBS. Without awareness or resources about CBS, Eva's mother was misdiagnosed with conditions like dementia and schizophrenia, causing significant emotional and psychological distress.

"[06:34] Eva Potts: The misdiagnosis for Charles Binet syndrome in older people are dementia, schizophrenia, severe bipolar disorder..."

This misdiagnosis not only affected Eva's mother but also highlighted the broader issue of lack of recognition and understanding of CBS within the medical community.

Challenges in Diagnosis and Medical Recognition

Eva emphasizes the systemic issues that contribute to the misdiagnosis of CBS:

"[01:09] Eva Potts: The problem with Charles Binet Syndrome right now? Well, one of the problems is that people are being misdiagnosed because Charles Binet syndrome has not been given a proper designated billing code for diagnosing..."

The absence of a specific billing code leads to inadequate reimbursement for doctors, thereby diminishing the priority given to accurately diagnosing CBS. This gap results in patients being erroneously labeled with psychiatric disorders, exacerbating their suffering.

"[12:45] Eva Potts: ...but there's no research behind it, because it's not being recognized. So here we go. It's all cyclical. Right. It's like..."

The cyclical nature of misdiagnosis and lack of research perpetuates ignorance about CBS, leaving sufferers without appropriate treatment or understanding.

Establishing Mary Carmel's Light

In response to her mother's experience, Eva founded Mary Carmel's Light to fill the void in resources and support for CBS:

"[14:33] Eva Potts: Mary Carmel's light began in 2021... I think I need to start a nonprofit."

The organization serves as a vital resource for both individuals living with CBS and their caregivers. It offers a 24/7 helpline, weekly support groups, and is actively working to incorporate research initiatives.

"[16:46] Eva Potts: We see great things coming as we revamp our 501C, hopefully to include research..."

Having recently appointed a retired Mayo Clinic neurologist, Dr. Leo Scoren, as their medical director, the organization is poised to enhance its credibility and effectiveness in supporting CBS patients.

Support and Coping Mechanisms

Mary Carmel's Light provides comprehensive support through various channels:

1. Helpline:
   A 24/7 helpline (704-389-0160) assists individuals seeking information or needing immediate support related to CBS.

2. Support Groups:
   Weekly virtual support groups every Saturday from noon to 2 PM EST on Zoom allow individuals and caregivers to share experiences and coping strategies.

   "[18:29] Eva Potts: ...we have learned that these people seem to be not as engaged with their..."

Eva discusses how different personality types affect the way individuals cope with CBS, emphasizing the importance of personalized support:

"[18:29] Eva Potts: ...if you're a really positive person..."

Additionally, Eva highlights the emotional challenges faced by caregivers, noting the pervasive sense of helplessness that often accompanies caregiving for someone with CBS.

Advocacy and Future Directions

Eva stresses the importance of normalizing CBS within the medical community to ensure proper diagnosis and support:

"[20:53] Eva Potts: That is a very good question. So, yes, we take phone calls from all over the US and Canada..."

She advocates for increased awareness among healthcare providers, urging them to inform patients about the possibility of CBS when vision loss occurs.

"[22:00] Ricky Yenger: ...it needs to be normalized..."

Highlighting research from the UK, Eva mentions that approximately one in three individuals with low vision experience CBS, underscoring the urgency for more extensive study and recognition in the US.

"[23:26] Eva Potts: ...approximately one in every three people with low vision or who have gone blind after being sighted get Charles Binet syndrome."

Mary Carmel's Light is committed to expanding their reach, advocating for research funding, and providing comprehensive support to those affected by CBS.

Conclusion

This episode of Hadley Presents provides a vital exploration of Charles Bonnet Syndrome, illuminating the personal and systemic challenges associated with the condition. Through Eva Potts' heartfelt narrative and the mission of Mary Carmel's Light, listeners gain a deeper understanding of CBS and the importance of proper diagnosis, support, and advocacy. The conversation underscores the necessity for increased awareness and resources to ensure that individuals with vision loss receive the comprehensive care and understanding they deserve.

For more information or support, listeners are encouraged to visit Mary Carmel's Light or contact their helpline at 704-389-0160.

Resources Mentioned:

• Mary Carmel's Light Helpline: 704-389-0160
• Support Group Meetings: Every Saturday, 12 PM - 2 PM EST via Zoom
• Contact Information:
  • Phone: 847-784-2870
  • Email: podcast@HadleyHelps.org

Stay Connected:

Have thoughts or suggestions for future episodes? Reach out to Hadley Presents at podcast@hadleyhelps.org or call 847-784-2870.

This summary captures the essence of the podcast episode, highlighting key discussions, personal stories, and the invaluable work of Mary Carmel's Light in supporting those affected by Charles Bonnet Syndrome.