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Support Group Forming for Those with Bonnet Syndrome

by Mary Ellen Johnson

My mother is a retired Randolph-Sheppard vendor who has been blind for more than 35 years. Originally her diagnosis was early macular degeneration, but retinitis pigmentosa and cataracts have been added to the list. As her eyesight diminished, she began to have hallucinations that her family doctor could not explain or treat. However, through a chance mention by one of her doctors, I learned her condition is known as Charles Bonnet syndrome. Now we are trying to locate other blind people who have the same condition.

According to a clinical paper found on the Internet written by Dr. Andrew S. Gurwood and Helen Abdal, Bonnet syndrome involves visual hallucinations which occur in, but are not limited to, visually impaired elderly who exhibit no evidence of dementia or psychiatric illness. In 1760, the Swiss philosopher first described the syndrome in his grandfather who was left virtually blind from cataracts. The medical community was made familiar with the syndrome more than 200 years ago; however, it is often not diagnosed. There are two reasons for this: the syndrome remains poorly misunderstood and under-publicized, and patients are naturally reluctant to admit to hallucinatory experiences for fear of being labeled as mentally unstable.

The article explains the hallucinations are perceptions experienced in the absence of an external stimulus to the sense organs. They are experienced as originating in the outside world (or within one’s own body). A variety of hallucinations have been described by Bonnet syndrome patients, but the most common is that of seeing a person. Other hallucinations ranged from simple patterns to complicated pictures of people or places.

If you have experienced Bonnet syndrome or know someone who has, please contact me by e-mail at [email protected], or by mail, PO Box 7852, Springdale, AR 72766. A support group is being formed.