Share Your Story

 

“I think the more people with disabilities explain how they see things, explain their view of the world, their place in the world, the way they handle things, the more other people can accept what is different and learn from that experience as well.”

                - Caitlin Smith, Singer and Songwriter

 

Individuals with achromatopsia (rod monochromatism or blue cone monochromatism) and/or their family members are invited to submit their stories.

Please email your stories to richw@eyeassociates.com. Please submit these as MSWord documents, Apple Pages documents, or in email form.  Submitting these to us provides your permission to present these on this website. But, you may at any time, request removal of your materials. We reserve the right to make minor edits.  Please avoid using the names of any specific individuals including doctors. Only your first name will be used. Or only initials will be used, if you request. Pictures are welcome and encouraged! If possible, please send them by email attachments as jpeg files. Hard copies of pictures can be sent to our mailing address but cannot be returned. 

Here are some ideas to help you write your story. Please feel free to write whatever you feel is important.  The areas below are just guides to help you think about your story. You can submit just a few sentences or several pages. You can just discuss one issue or write your entire story. Please email your stories to richw@eyeassociates.com.

 

Are you a rod monochromatism, blue cone monochromatism or not certain?

What is your age and gender?

Do you have other family members with achromatopsia?

Have you met others with achromatopsia?

Describe your problems with bright light.

How do you control the light and glare?

Describe your color vision problems.

How do you deal with the color vision issues.

Do you have some residual color vision?

How has it affected your life?

What were your experiences as a child?

How has this affected your schooling?

What are the social or emotional impact?

Are you able to drive?

If you drive, what was the process like to become a driver?

Do you use filtered contact lenses and if so has it helped you?

What low vision aids do you use such as video/CCTVs, reading eyewear, magnifiers, monocular, bioptic eyewear, etc?

What is your occupation and how is it affect d by your achromatopsia.

What have been your successes in life?

What are your tips for living with achromatopsia?

Consider discussing specific problems you have encountered.Parents might discuss issues in raising a child with achromatopsia.

How have the schools worked with you to adapt  your child educational plan?

How have you modified your home and work place?

What advise would you give to others with achromatopsia?