'Vision Of Hope'

Q & A
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Question: Why have I never met in person someone with my problem?

Answer: This is a very rare condition. There are probably less than 10,000 people with it in the United States, a country of over 309,000,000.

Question: Will this condition get worse? Will I loose more vision?

Answer: Achromatopsia is usually a stable condition. It is very rare for any major progression to occur. There are separate conditions called progressive cone dystrophies that appear similar to achromatopsia that can progress. These can usually be differentiated from achromatopsia by the doctor and often start at a later age than achromatopsia.

Question: What can I do to improve my vision? Will eye vitamins help?

Answer: Animal studies have suggested some benefit in achromatopsia of using antioxident vitamins. We have no major human studies yet. More research is needed.

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Question: Is there any diet that I should follow to help my eyes?

Answer: There is no specific diet to help patients with achromatopsia, but based only on animal studies, a diet of food rich in antioxidents may be considered. More research is needed.

Question: Is there a medical or surgical treatment?

Answer: There are no current medical or surgical treatments for this disease. There are surgeries that may reduce nystagmus.

Question: Will stem cells or gene therapy help?

Answer: There is current success in gene therapy to treat achromatopsia in mice and canines. This may represent the future in treatments. It holds great promise, but it will take time for this to be studied in humans. In the dog model, the best results occurred when the dog was treated within about the first year of life. See our section on genetic treatments.

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Question: Why does my son not like to wear the prescription the doctor prescribed in his glasses?

Answer: Not all achromats will accept their full prescription. The high hyperopia prescriptions, found in many rod monochromats, may be more difficult for some patients to wear. These high corrections create parallax motion. Sometimes a partial correction is better and in some cases non-prescription lenses with the correct filter may be more accepted. Sometimes dark filters in the lenses result in the child being teased. In older children, filtered contact lenses may be helpful.

Question: I was told I am “legally blind” but I am not sure what this means?

Answer: Legal blindness is not a medical term. It was established in the 1936 Social Security Act to set a marker on the eye charts at which governmental benefits would be provided. It has traditionally been written as: Vision in the either eye no better than 20/200 or visual field less than 20 degrees. However, in 2007 to clarify a problem created by different types of acuity charts, Social Security changed the definition to allow legal blindness if the patient cannot read any letters on the 20/100 chart with either eye.

Question: Why does my child want to play outside only at night?Answer: The nighttime is your child’s best time for vision. The light that blinds them in the day is gone. I encourage you to do many activities with your child at night.

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Question: Why does my child have congenital achromatopsia? Did we do something wrong?

Answer: No! These are genetic diseases. It is not related to any behavior, medication, or drugs!

Question: Why do my child’s eyes seem to shake?

Answer: Sensory nystagmus is often the first sign that a child has a vision problem. It is typical in nearly all children with impaired vision from early age. On first onset, it requires careful medical workup usually with a pediatric ophthalmologist to rule out various causes of vision loss that produce nystagmus. It is also commonly seen is other congenital vision disorders including albinism.

Question: When my child's eyes shake from the nystagmus, does he see the world shaking?

Answer: No! In nystagmus that begins in early childhood, the child will not see the world shaking. In the onset of nystagmus in later life such as head injury, oscillopsia, the sense the world is moving can occur.

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Question: I did not detect my child's eye shaking until three months of age. Did I miss early signs of this problem?

Answer: No! The nystagmus associated with achromatopsias usually appears about age 3 - 4 months. The aversion to light also begins in this time period.

Question: The shaking of the eyes seem to change. Why does it change?

Answer: Stress, illness, direction of gaze of the eyes and converging the eyes to read all my affect the speed amplitude and type of nystagmus. When nystagmus increases, the visual acuity may decrease slightly at that time.

Question: Why does my child seems to tilt her head slightly to on side?

Answer: Many patients with nystagmus have a null point, a position of the head and eyes that slows the nystagmus and thus improves the vision. You should encourage the child to assume their preferred position to see well. Be sure other caregivers, teachers and relatives understand this.

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Question: My child sometimes seem to look slightly away from what he is supposed to be looking at?

Answer: Some achromats may shift their fixation slightly to the side to place the image on the area they see better rather than right on the center of the eye. This is called eccentric fixation. It is not the same as the null position. It can slightly improve vision. In most achromats, owing to their mild vision loss, it is usually only a slight shift.

Question: How can I help my child see better?

Answer: The first step is getting the diagnosis and then you need to see the low vision specialist. Controlling light is the first most important step. You must create a world where light and glare are controlled so your child can thrive intellectually and emotionally. See our section on Children's Vision.

Question: When can a child be fit with filtered contact lenses?

Answer: This is always a difficult question to answer. The benefit of the contacts is great, but the handling of lenses can be an issue and the ability of the child to report discomfort can be an issue. The answer depends also on the parents, especially their ability to handle the contacts lenses. We know from our experience that by age nine many children handle contacts quite well. Younger children must be looked at on a case-by-case basis. The child's maturity and motivation should be considered as well. Many young children do fine with red or magenta filtered eyewear until they reach an age where cosmetic appearance becomes more important.

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