50 Shades of Shades

by Maurie Hill on July 16, 2014

Picture of Maurie sporting her sunglasses and hatRecently Byron Lee, Rodney Edgar, and I sat around on our respective patios for another edition of the High Contrast podcast. We talked about everything under the sun, quite literally. Though sunshine is the last thing my retinas need, this is not going to prevent me from hanging out on my deck on a gorgeous day. Protecting your eyes from the sun without completely blocking vision is easier said than done.

While we certainly couldn’t come up with a unified solution, we shared our own experiences and research, and would gladly welcome your input. What types of sunglasses and hats have helped you face the bright light? Can one get protection and be fashionable at the same time? It’s kind of a lofty goal I’m striving for, so help me out here!

Listen to the latest High Contrast episode and leave your comments below.

  • http://www.localwebdesignlondon.co.uk/ Zoe Faulkner

    I use sunglasses that have UV ray protection and any type of hat.

  • Beth Selander

    I’m 47 year old female
    in the Seattle area. In the last six months my vision has deteriorated.
    I always knew I had druzen spots for the last 10 years, but was told they
    probably would never amount to anything. Unfortunately this is not the
    case. I’ve been very stressed and depressed while waiting for a diagnosis and
    testing since January. I just had my first ERG and visual field testing last
    week. I’m sure the doctors already know my disease and prognosis, but I
    have to wait until the end of August to see the doctor and get the official
    diagnosis and genetic testing. It is very difficult waiting. My
    eyes are very light sensitive. I know it is best to get the maximum
    amount of UV protection in sunglasses, but is it also best to have the darkest
    sunglasses? Does the darkness matter, or is it the UV protection that is
    most important? This is all so new to
    me. I’ve been told by several
    specialists that whatever I have is extremely rare and not fixable – I overheard
    the word Stargardt’s used a few times as their best guess (first specialist
    that sent me to eye institute). I tried
    asking the techs doing the testing, but the techs could not legally tell me
    anything – I understand, they could get in trouble. This waiting is horrible, and worrying about
    the future and vision loss is making me very sad. Until I know, I want to try to protect my
    eyes the best I can.

  • Maurie Hill

    Hi Beth,
    Wow, to wait since January for a diagnosis is a long time. But the latest tests you had, the visual field test and ERG should complete the story. From my experience, the diagnosis of Stargardt Disease is more of a process of elimination than anything else. They couldn’t diagnose me at the Mass Eye and Ear when I was 20 years old but finally did when I went back at 35. It must be hard to detect until it gets to a certain point. But yes, protecting your eyes no matter what is a good idea. I also wonder about UV protection versus darkness of lens. I believe for probably many of the retinal degenerative diseases, limiting your eyes exposure to light is important. And from what I understand, this means dark lenses in addition to UV protection. I say this because when a doctor was asked at one of the Foundation Fighting Blindess conferences I went to, he said the darker the better. And outdoor light is way more harmful than indoor. That said, you still need to live life without tripping over things. I don’t wear glasses inside but always wear sunglasses outside, even on very cloudy or rainy days. I have different shades. I don’t have any real dark ones. Those with Stargardt disease seem to get better contrast with an amber colored lens. I’m trying to get some dark amber lenses. Stargardt is probably the best diagnosis you could get out of the retinal degenerative diseases as it typically only affects contral vision. Best wishes and the wait will come to an end soon.

  • http://www.aisquared.com Becca White

    Beth, Maurie wrote you a reply but it appears as just another comment on this page, so I just wanted to make sure you got it :)

  • Beth Selander

    Thank you for your kind words guys! It’s been a stressful time. I meet at he the specialist and geneticist August 22nd. In the past few months it seems like my vision has gotten a lot worse. I was hoping to have a really slow progression. I guess they might be able to guesstimate based on genetic testing? Is it the norm to have to wait a long time for diagnosis after testing? I live I the Seattle are and have to drive to Portland OR. I’m guessing because there are so few of these specialists and facilities, that they are booked way out? I was told the next closest facility that I could go to is in CA. I’m just happy that OR is only a 3-4 hour drive from us. I’ll keep ya posted. Thank you thank you for your speedy replies and wonderful support.

  • Maurie Hill

    Hi Beth,
    In my experience, a period of seemingly rapid progression is followed by a very long period of slow progression. Don’t be disappointed if the genetic testing does not show anything. I think that about half of Stargardt patients do not show the particular genetic mutation they are looking for. This simply means that all the mutations that cause Stargardt disease have not all been identified. But your geneticist will know more about that. Anyways, I’m sure they will be able to diagnose from the photographs, ERG, and visual field tests that you had. Best wishes and keep us posted. August 22 is very near! And yes, all that testing equipment is very expensive so I’m not surprised that you have to drive a long ways for the testing. And good retina specialists are likely to be in the major cities as well.

  • Tom Coburn

    Along with being a Congenital Rubella Syndrome baby in late 1970 before MMR vaccine was invented, I recently got a late onset of Glaucoma. The doctors don’t know why. Ever since vision has dropped from 20/100 to 20/300 to now CF @ 1 foot range. The closer I become to total blindness, the more scared I become, not for loosing my sight, but how I’m going to continue being Computer literate. I have various eye drops I take to keep what I have for as long as possible, but I seem to loose a bit more each day. Anyway since then I’ve become extremely photophobic, which is extreme light sensitivity. I started out having to change invert brightness on every time I encounter something on the screen thats on a white background, rather its facebook or MS word I immediately have to turn invert brightness on because to me those backgrounds are like looking directly at the sun, too bright to tolerate without squinting, On black backgrounds I can see pretty darn near newspaper print, so it makes a huge difference for me, but thats like 2 inches from my face, in one eye, the other eye I can’t read anything with it, and what was once my good eye is now my bad eye and vise versa, which is rather odd. I have micro cornea too with nystagmus, afakia, and other stuff which makes glaucoma surgery not an option for me. So I have to wear sunglasses all the time now to prevent UVA & UVB rays from damaging more of my remaining sight, but its a real struggle sometimes, because everything is clearer sharper with sunglasses on, not so photophobic, but sunglasses block the light which impairs my remaining sight more, so its like this constant battle sometimes I take ‘em off other times I put ‘em on just like invert colors on the computer, depending upon what I’m trying to see, so usually I wear a light yellow tinting. I got these safety glasses from walmarts lawn and garden dept for $4 a light yellow tinting that block 99% of both UVA and UVB rays, that work better then anything else I’ve tried. The eye doctor gave me these light orange or amber I guess its called, prescription lenses that are too dark, so my point is, for us, sunglasses are always a struggle to get the color tinting right, but whatever color you can see thru best, whats important is a pair that blocks both UVA & UVB rays because those UVA & UVB rays are what damage the sight & what we need the sunglasses for. I’ve tried many different shades, dark black, green, purple, amber, orange, all of them are too dark its like being totally blind with them on, only ones that are light enough for me to actually see thru are the yellow tinted ones, and those are hard to find esp with UV protection, I found these in lawn and garden at walmart & they work better then any pair I’ve ever owned, so, whatever works ya know :)

  • Gini Noblit

    I’d like to offer Beth some encouragement. I was diagnosed with the wet form of macular degeneration when I was 56 years old. (I’m now 74.) My vision went from 20/70 to 20/200 over a weekend. Fortunately, there was a retinal specialist in Wilmington, DE, near where I live and I was able to get an appointment within days. He treated me with lasers and over the next 2 years, I had laser treatments 3 times on my right eye and 2 times on my left. Within those 2 years, I became legally blind. My central vision is now counting fingers at about 1 1/2 to 2 feet. There are many resources available and many assistive technologies, like ZoomText, I learned to use averted vision to see things even though I can’t read even large print. The National Library for the Blind and Physically Handicapped offers books on cartridge and the player to play them and also has a program whereby you cam download books and magazines onto your computer to be put on an SD card which is then played on a special reader, not supplied by NLB. I have learned to use my sense of touch to knit, crochet, spin, and weave. The Hadley School for the Blind offers online and cassette courses in many areas, including Braille and methods for marking things for easy identification.
    Oh, and I wear amber sunglasses. I find they cut down the glare very well.
    I hope this info helps allay some of your fears and trepidation about your vision loss. Best wishes to you. Don’t be afraid; you CAN do this!
    Gini Noblit

  • Diane

    Beth, I would like to offer my prayers and my encouragement to you. The serenity prayer (the whole thing, not the pithy first part) offers me great comfort when it says, “living one day at a time, enjoying one moment at a time.” So I do my best not to worry about how I’ll take care of myself tomorrow or how I’ll keep my job-as a graphic artist no less- but I try to live in THIS moment so that this disease does not rob me of the joy of life. You still have so much to enjoy in your life; tastes, physical sensations, music, laughter, love. I pray that you will enjoy these things today and let tomorrow worry about itself. -hugs to you.

  • Diane

    I found some super stylish shades at debspecs.com though for wrap-around I use simple UV bifocal safety glasses, clear for indoor, dark or amber for outdoor. I wear gradient shades indoors with florescent lights to help minimize annoyance from black spot defects.

  • https://www.youtube.com/channel/UCQmj5S5VzK064HN5hB_YNhQ Jon

    first pair rubbish from halfords, fell apart, no side protection, now wearing blublockers, anyone remember those from the eighties? total protection, and my model does protect all round. had to order from the states tho… ;(

  • Jhon

    I use sunglasses with X ray vison :)
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