The Fight for Awareness: Charles Bonnet Syndrome & Judith Potts' Continued Advocacy

Introduction

Charles Bonnet Syndrome (CBS), a condition where visually impaired individuals see vivid hallucinations due to significant vision loss, is complex yet largely unknown. Judith Potts, the founder of Esme's Umbrella, the first-ever campaign for awareness of CBS, carries a deep, personal connection to battling this condition—her mother, Esme, suffered from CBS.

The Journey Begins

Esme's initial struggle with CBS began over a decade ago when she was living independently while battling glaucoma. In her nineties, Esme began seeing non-existent individuals sitting on her couch, a child in Edwardian clothes following her, and even grotesque gargoyles grotesquely jumping around her apartment.

As Judith recalls her mother's distressing condition, she admits that like most of us, she initially thought these strange occurrences were symptoms of dementia. However, upon stumbling upon a brief article about Charles Bonnet Syndrome (CBS), she realized that the symptoms described matched her mother's experiences.

Medical Challenges and Disbelief

When Judith reached out to various medical professionals to discuss CBS, she was met with resistance. Her mother's ophthalmologist flatly refused to discuss the condition. The general practitioner believed it was all in the mind, a manifestation of dementia rather than CBS. This dismissive attitude stunned Judith and fueled her resolve to seek help elsewhere.

Persistence led Judith to Professor Dominic ffytche from King's College University in London. His explanation of CBS and insight into the visual hallucinations triggered by diminishing sight provided a newfound understanding for Judith.

Spreading Awareness: Making a Difference

Since then, Judith has worked tirelessly to raise awareness about CBS. Knowing from personal experience how the lack of awareness or understanding of CBS impacts patients, she took on the challenge of establishing Esme's Umbrella, an organization dedicated to understanding, studying, and spreading awareness about CBS.

Esme's Umbrella not only provides vital support to those affected by CBS but also pioneers research into the condition. Whether it's coordinating with Professor Mariya Moosajee on pediatric research, or working with therapists who have firsthand experience with CBS, Esme's Umbrella is frequently at the forefront of groundbreaking CBS developments.

CBS & Isolation

An unexpected aspect of the work Judith does with Esme's Umbrella emerged during the COVID-19 pandemic. The lockdowns and isolations heightened the occurrences of CBS among affected individuals. As a response, Esme's Umbrella promptly constituted support groups online and over the phone to assist those dealing with the distressing symptoms of CBS.

Understanding Charles Bonnet Syndrome

Understanding CBS is crucial for patients and their caregivers. It's not an easy battle, and people diagnosed often find it overwhelming. Judith encourages pushing past the fear, explaining to loved ones about their condition and seeking assistance whenever possible. Simultaneously, it's just as essential for caregivers to exercise infinite patience. Often, reassurance, patience, and a supportive shoulder are all that CBS patients need most to navigate this challenging health issue.

CBS Awareness Day and Esme's Umbrella's Endeavors

Every year on November 16, CBS Awareness Day aims to shed light on the lesser-known aspects of CBS. Esme's Umbrella remains committed to its mission of making CBS a well-known and well-understood condition. Whether through funding research or discussing the latest CBS findings in a parliament building, the team is ceaselessly working toward their goal.

Whether you're a doctor, a therapist, or just someone who knows someone affected by CBS, you can help. By spreading awareness about CBS and encouraging open conversations around it, we can all help make living with CBS a tad less overwhelming.

In the fight against CBS, Esme's Umbrella stands unwavering. As Judith puts it, she intends to continue the mission "until I can no longer do it." CBS may be a silent battle, but with advocates like Judith and organizations like Esme's Umbrella, it need not be fought alone.

Listen to Judith Potts' podcast episode here.