Nordbyįearing the discovery of their problems, some achromats may find ways to avoid reading, which would be at a very close distance, avoid wearing the dark, often red filtered lenses or using low vision aids.
Knut Nordby, Vision in a complete achromat: a personal account. If, on the other hand, I first expose my visualhandicap to people after tehy get to know me, I get fewer such reactions" If I show my handicap to people who do not know me I will be categorized as a disabled person and will be treated in a patronizing way and often not taken seriously. The stigma of being partially sighted can be very unpleasant. I often experience negative attitudes if I expose my visual disability before people get to know me. ".it can be seen that I often avoid showing my visual handicap and sometimes simulate normal vision. And, no one wants to be identified by his or her “condition.” Everyone wants to be known by his or her personal qualities not just by being visually impaired. They fear they will be stigmatized as “blind”, and be patronized as being so impaired as to require great help, which is not true. Some achromats may worry about their first impression. For some achromats, is easier to hide their vision problems, at least initially, from strangers and sometimes even friends.įearing the uncertainty of acceptance and understanding of others may lead achromats to hide their condition. Prior mistreatment especially in childhood can leave the achromat fearful of presenting their condition. Many elect to hide signs of their vision impairment. The innate rareness of achromatopsia and the worry of how they will be perceived by others can leave achromats uncertain of which way to present themselves to the world with their visual problems and adaptations obvious or by hiding all signs that could let others sense they have vision problems. See our resource section for links to these other resources. The new communication options of the Internet, websites like, Facebook, MySpace, Blogs and Twitter are beginning to connect achromats together and thus lessen the emotional and social impact of this rare condition.
Living with Achromatopsia and Understanding and Coping with Achromatopsia have literally become the patient manuals for achromatopsia. Frances Futterman’s two wonderful publications featured the voices of many achromats.
Today, the Yahoo Achromatopsia Group plus Facebook sites give achromats a gathering point in cyberspace. Before the late Frances Futterman with the help of her husband, Mark, developed the Achromatopsia Network, most achromats around the world had never shared their concerns and problems with fellow achromats. This has led most achromats to feel alone in dealing with their vision problems.īefore the development of the Internet, nearly all achromats had never communicated with another achromat with the exception of a sibling who also has the condition. Achromatopsia is a rare disease, with perhaps less than 10,000 achromats in the United States, a country of over 300,000,000. Thus they may appear at times to function as severely visually impaired and others times seem to function without difficulty.īecause of the rareness of the disease, they also live in a world with little understanding of their condition.
If I do those things I will be successful.Īchromats live in two worlds, a world of impairment triggered by bright light and the world of dimmer light where they can flourish. “I plan to live my life to the fullest, challenge myself at every opportunity, never give in, never give up, and always fight for what is right and just.