About Mary Carmel’s Light
Mary Carmel’s Light is a nonprofit organization based in North Carolina dedicated to supporting individuals with low vision or onset blindness affected by Charles Bonnet Syndrome (CBS).
Founded by siblings Eva and Kevin Potts, the organization is a heartfelt response to their mother, Mary Carmel Potts McCoy, who lost her vision and experienced the challenges of Charles Bonnet Syndrome.
Charles Bonnet Syndrome is a condition that impacts individuals with low vision or those who have lost their sight, after having vision. It occurs when the brain compensates for the lack of visual input by inserting various images into the person’s visual cortex. Charles Bonnet Syndrome occurs when the brain no longer receives images from the eyes and will compensate by inserting images into the individual’s “vision” which can be memories, daydreams, nightmares, worst fears, highest hopes, products of imagination, beautiful imagery or what might even feel like “crazy” hallucinations. The experiences with CBS vary widely, with some individuals managing mild symptoms, but many are beset with a misdiagnosis of Dementia, Schizophrenia, Lewey Body Dementia, and Severe Bipolar Disorder leading to improper medical care and prescriptions, possible incarceration, isolation, depression, anxiety, stress, family crises, and the list goes on and on.
- Charles Bonnet Syndrome (CBS) is a condition that impacts individuals with low vision or those who have lost their sight.
- CBS is often misdiagnosed as Dementia, Schizophrenia, Lewey Body Dementia and Severe Bipolar Disorder.
- CBS presents without warning causing fear, anxiety and confusion for the person with CBS and their loved ones.
- CBS is NOT a mental health condition and your loved one is NOT “crazy” or mentally ill.
- CBS should be normalized and recognized as a potential symptom accompanying any condition that may impact or reduce vision.
Mary Carmel’s Light is on a mission to raise awareness about CBS
Charles Bonnet Syndrome is a condition that impacts individuals with low vision or those who have lost their sight after having vision. Mary Carmel’s Light is on a mission to raise awareness about CBS, not only among the affected individuals and their families, but also within the medical community and the broader public.
Mary Carmel’s Light
We offer support, resources and information, for those that have symptom experience, caregivers that support them, and professionals that research and treat Charles Bonnet Syndrome. Our organization focuses on education, data collection, civil engagement, support group involvement, and providing resources and tools to people living with CBS, their families, and caregivers.
People Experiencing CBS
Options and knowledge for those that have CBS or are looking for a diagnoses for those with symptoms
Caregivers, Family & Friends
Information about CBS, support groups and consulting
Medical Providers
Resources for those that diagnose, treat and research CBS
Mary Carmel
Mary Carmel was born on July 16, 1932 in Jersey City, NJ to Jack and Kitty Garvey. From the day she arrived, Mary was a curious human. Always investigating her surroundings, reading any material she could get her hands on, and poking her nose into anything that caught her eye or interest. Her curious nature would serve her well throughout her remarkable life.
Mary Carmel’s Light
PO Box 2592
Indian Trail, NC 28079
Upcoming Events
August
CBS Support Group – every Saturday at Noon 12:00pm
Sept.
CBS Support Group – every Saturday at Noon 12:00pm
Oct.
CBS Support Group – every Saturday at Noon 12:00pm
Nov.
CBS Support Group – every Saturday at Noon 12:00pm
CBS Support Group – every Saturday at Noon 12:00pm EDT followed by Caregiver Support Group at 1:00pm EDT. Please call +1 (502) 439 0398 or +1 (704) 389-0160 to join.
Do you refer doctors?
We can not give you a medical referral, but we can assist you in your search for servcies, resources and information.
Do you accept donations?
Yes. You can click the donate button at the top of the page or Donate Here
Is CBS a mental *condition* or eye disease?
It is neither. CBS is not a mental condition. CBS is a physiological condition with no auditory or tactile component. CBS causes the brain to create its own images to compensate for the lack of input from the eyes.
Where can I find support groups?
There are resources for you. We can help you find one that fits your life and needs. CBS Support Group – every Saturday at Noon 12:00pm EDT followed by Caregiver Support Group at 1:00pm EDT. Please call +1 (502) 439 0398 to join.
I’ve never heard about CBS. Is it new?
Charles Bonnet Syndrome (CBS) is NOT new; it was originally discovered in 1760 by a Swiss naturalist, Charles Bonnet. However, it was not given the name ‘Charles Bonnet Syndrome’ until 1967 by a French-Swiss neurologist who coined the term in honor of Charles Bonnet. In 1989, the psychiatric world acknowledged the syndrome and clarified that the hallucinations associated with CBS do not affect other sensory modalities such as touch or hearing. It wasn’t until 2019 that the World Health Organization recognized CBS as a physiological condition and assigned it an ICD-11 code. However, in the US, there is still a need for a medical billing code for Charles Bonnet Syndrome to ensure the condition can be properly diagnosed and treated. Currently, the medical community in the US is hesitant to diagnose or treat CBS due to issues with insurance reimbursement
