One of the most helpful things for someone with achromatopsia is the right sunglasses. The essential thing is blocking light, and regular sunglasses just won’t do. Blocking light requires both a very dark tint and the right frames that prevent light coming in around the edges. A hat with a good brim can help stop light sneaking in around the edges as well.
If your child has just been diagnosed, then to get started I highly recommend ordering a pair of pediatric frames with NoIR Filter #93 4% Red lenses (just call them up on the phone 800-521-9746 or 734-769-5565)
These will make an amazing difference outside! If you’ve gotten your child diagnosed earlier than we did, and need glasses for an infant then I’m afraid I don’t have direct experience to share. Another parent highly recommends the NoIR infant sunglasses, saying they are much easier and cheaper than anything else. So I would try them if you have a very little one.
Beyond this initial step there is lots more to try. First, you can get more glasses. Most people with achromatopsia seem to have at least two pairs, a darker pair like the NoIR Filter #93 4% red for outdoor sun, and a lighter pair for inside. NoIR Filter #95 14% medium red used to be a good bet for bright lighting inside but it has been discontinued. At one point we had three tints (light, medium, and dark) for my daughter, but now she has just two tints (medium and dark).
Second, you may want to try different frames. When my daughter was a toddler, she wore a pair of the Julbo “Looping” frames. (I used to check out what’s available at Julbo in the junior line and then buy on Amazon.) We had our local eye-wear shop cut the lenses and put them in the Julbo frames. (Save the original lenses for when the frames are outgrown and younger brother/sister wants cool shades to match older sister/brother.)
Third, you may want to try custom tinted Rx lenses. Eye doctors push Rx lenses hard, but many people with achromatopsia say not to bother because they don’t make a difference. I come down in the middle. I think it is absolutely right that the most important thing to get right is the tint—bright light is blinding so without a dark enough tint nothing else matters. That said, whether Rx lenses are helpful will vary from person to person. My daughter’s prescription is strong enough (she is about -4 diopters) that she sees noticeably better with Rx lenses, so that is what we use.
Altogether my daughter has 3 pairs of custom tinted Rx sunglasses, a dark pair for outside and two lighter pairs for inside—one regular Rx for normal use and a second with a reading Rx for reading and art.
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One thing to keep in mind is that everyone is different, so it is worth experimenting and not assuming that what I recommend (because its best for my daughter) will be best for you too. NoIR makes experimenting very easy—they will lend you by mail a whole set of sample sunglasses in a range of tints if you call up and ask. Of course this is easier once your child is old enough to tell you which they like best.
- Some people swear by cat 5 welding glasses, as apparently they are dark enough and are pretty cheap. I don’t think they make them in children’s sizes, so I haven’t looked into this option yet and I can’t tell you more.
- Contacts are obviously very important for many people with achromatopsia, but my daughter is only 6 and we haven’t tried them yet.