Hi Gabriel here, I want to dedicate this post to Mary Carmel’s Light and their activism towards bringing light to those whose eyes mainly see dark. I say mainly because these people advocate for living with a condition called Charles Bonnet Syndrome; a condition that impacts individuals with low vision or those who have lost their sight, after having vision. This condition as stated by MCL’s page (https://marycarmelslight.com), “occurs when the brain compensates for the lack of visual input by inserting various images into the person’s visual cortex.” The brain compensates for this lack of visual input by filling in the gap with memories or images of nightmares, dreams or any other products of their imagination.
A large reason they advocate for this condition’s recognition isn’t only for society itself, but the medical world too. The world health organization has recognized CBS an ICD 11, but have done a disservice to CBS by stating it should be temporary and should only last 18 to 24 months while many reports show it is permanent The US requires an ICD 10 billing code for it to be able to be diagnosed in the US. Mary Carmel’s is working towards making this possible. Every time you speak about CBS and bring it’s attention, others learn about it and do the same. Getting the name of Charles Bonnet Syndrome out there is the way we can get the people in charge to make this billing code.
The board for this initiative is led by Eva Potts(President and Co-Founder) and Kevin Potts(Vice President and Co-Founder) who created this 501c3 nonprofit organization in NC due to their mother’s ,Mary Carmel, experience with CBS. Since this is spoke about inside the interview I’ll be giving a small summary. She started experiencing Charles Bonnet Syndrome and while she was under the care of caretakers she was misdiagnosed with dementia even though she can recollect all past events perfectly. When Eva and Kevin found out about CBS thanks to a family member called Rosemary G. Anderson, they asked their mothers medical professional and they could not diagnose her with it. Later when going to a Neurologist she was confirmed to have CBS.
Other members of the board like Kenneth M Ellis and Duchess Antoinette McDonald-Ellis have very special stories too! Kenneth is the life partner to someone with CBS and has seen the first hand effects of CBS from an outside lens just like Eva Potts and Kevin. Antoinette is actually a lady who has CBS and despite her condition continues to power through to bring advocacy to other’s like herself.
Something I’d like to add to this is the fact that this condition affects 1/3 blind people. This condition was common enough for 5 of the 9 people on this board to have a personal connection to Charles Bonnet Syndrome. This condition is common yet uncommon to society. The spread of awareness for information on conditions and other information regarding the medical field is a common goal for both Mary Carmel’s Light and The Medical Messenger. It is important for you, the reader, to continue to inform themselves about conditions that could be affecting people you walk past everyday.
We had the special opportunity to be able to speak to Eva and Kevin Potts about Charles Bonnet Syndrome and their goals as Mary Carmel’s Light. For more information on how they continue to push forward as the only organization in the United States speaking on CBS please take an hour of your day to hear the voices of these strong individuals.
