Medical Charity
Mary Carmel’s Light
… empowering people living with Charles Bonnet Syndrome
Mary Carmel’s Light was created to support and empower people living with Charles Bonnet Syndrome (CBS). This nonprofit is the first of its kind in the USA, co-founded by siblings Eva Potts and Kevin Potts.
Established to raise awareness, provide education, offer support, and share information about Charles Bonnet Syndrome to those living with CBS, the medical community, research organizations/foundations, and the general population.
A Physiological Condition, Not a Mental Illness
Charles Bonnet Syndrome is a physiological condition that affects individuals of any age, race, gender, ethnicity, sexual orientation, or socioeconomic status. Based on UK research, 30% of people with substantial vision loss will develop CBS.
Individuals who have lost a significant percentage of their visual acuity to eye disease, accident, injury, or illness can begin to experience silent visual hallucinations. These hallucinations are not auditory or tactile and can vary from pleasant to frightening and even nightmarish. These individuals are NOT mentally ill, mad, or crazy, and they can be helped.
The challenge faced by people living with CBS is ongoing misdiagnosis and the use of medication that neither improves nor affects their CBS hallucinations. Often, these inappropriate medications cause serious side effects, increase the risk of falls, sometimes worsen CBS hallucinations, and can lead to neurological or physical damage that was not present before the medication was prescribed.
Dr. Leo Skorin, Jr., DO, MS — Medical Director, Mary Carmel’s Light
Charles Bonnet Syndrome is the occurrence of visual hallucinations in individuals with vision loss. The amount of vision loss can vary, but greater loss increases the risk of CBS developing. CBS has been associated with disease processes at any level of the visual system. CBS can occur at any age, including children.
The visual hallucinations are frequently detailed, clearly formed images that may be static or dynamic, and usually with vivid colors, but can also be black and white. What the individual actually sees is highly variable. Patients may see different images at different times of the day and on different days. The images occur and disappear randomly.
A key point is that these images are non-threatening and can be pleasant, although it is possible that the individual may find them irritating and anxiety-provoking. Patients with CBS retain their insight into the unreality of what they see. They do not have psychosis, delusions, dementia, or hallucinations of their other senses.
Recognition, Resources & Support
The struggle for people living with CBS is in receiving a proper diagnosis, being recognized by the medical and healthcare communities, and receiving information, resources, and support for their CBS diagnosis.
Dr. Gary Cusick, PhD, Clinical Psychologist — Information & Research Specialist
Charles Bonnet Syndrome (CBS) is the appearance of visual hallucinations occurring in the context of sight loss. When no longer receiving adequate input from the eyes, the brain produces visual images that the person perceives as existing in the external world. This is akin to phantom limb pain and tinnitus, which are loss of touch and hearing, respectively.
Fear of being diagnosed with dementia or psychosis, those with CBS are reluctant to discuss their experiences with their doctor. As a result, doctors are not familiar with this syndrome and are unable to provide treatment to those asking for help. There is no known medical cure, but reassurance that the patient is not losing their mind can relieve anxiety in both the patient and the caregivers during this difficult time.
Support group participation is suggested to reduce misconceptions and to provide a direction toward maintaining quality of life. Cognitive Behavioral Therapy has been shown to assist the person in changing how they think and feel about the sometimes confusing images.
Dr. Gary Cusick, PhDCaregiver support is also needed to assist caregivers who are struggling to care for their loved ones.
A Call to Action for the Medical Community
CBS is often misdiagnosed. People living with CBS are fearful of reporting their symptoms to family, friends, and caregivers due to the stigma of being labeled mentally ill.
Common Misdiagnoses in Adults
- Dementia
- Schizophrenia
- Lewy Body Dementia
- Severe Bipolar Disorder
- Psychosis
Common Misdiagnoses in Children
- Schizoaffective Disorder
- Autism
- Dissociative Disorder
- Psychosis
Charles Bonnet Syndrome does not have a designated billing code, which is necessary for diagnosing, treating, and ultimately, finding a cure for CBS. We need an MD in good standing with the AMA to take up the charge and apply for a CPT code for CBS.
We must bring Charles Bonnet Syndrome into the 21st century so that people living with CBS can do so with dignity, grace, and inclusion while preserving quality of life.
Mary Carmel’s Light Mission StatementWe Are on a Mission to Educate the Medical Community About CBS
Without this acknowledgment, CBS will continue to be unreported and misdiagnosed. People with CBS will continue to live in isolation, face a mental health stigma, and have a diminished quality of life.
¹ Source: UCL Discovery — discovery.ucl.ac.uk/id/eprint/10088653