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Macular Dystrophy?!?!?!? Did I mean to type Macular Degeneration and make a mistake? That was my question about the Fox News typist for their article, Glenn Beck Announces He Could Lose His Vision! Unfortunately, due to its impact on a couple of my friends and family members, macular degeneration is definitely a well-known word around here. And, of course, muscular dystrophy is well-known thanks to all of Jerry Lewis' hard work. But I had never heard of macular dystrophy. Have you? I decided to learn a bit more about it, and share that newfound education with you. 🙂
In reading the article, I discovered that Glenn Beck, 46 (a "baby" in the baby boomer generation), was recently diagnosed with a rare disease called macular dystrophy, which affects a tiny portion of the retina called the macula — the part of the eye responsible for seeing sharp details and recognizing faces. According to WebMD, "In macular dystrophy…
"…a pigment builds up in cells of the macula. Over time, this substance can damage cells that are critical for clear central vision. Vision often becomes blurry or distorted. Typically, people with macular dystrophy maintain side (peripheral) vision, so they are not totally blind."
Very interesting! I found a few more resources regarding Macular Dystrophy online:
- Medpedia has an article on Vitelliform Macular Dystrophy, which is what most writers surmise is the type of macular dystrophy he has.
- Genetics Home Reference/National Institutes of Health – Vitelliform Macular Dystrophy
- MedlinePlus – has a great graphic of the eye and where the macula is
And, of course, Amazon has an excellent selection of books for macular degeneration with a couple for the rarer macular dystrophy including:
- Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight (Macular degeneration only)
- The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed (does have at least one – two references to macular dystrophy as well)
- Vitelliform Macular Dystrophy – A Bibliography and Dictionary for Physicians, Patients, and Genome Researchers – This seemed particularly useful to families who might be researching the subject. As their description points out, "Since only the smallest fraction of information dealing with Vitelliform macular dystrophy is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so."
And, for all of you baby boomers and seniors who, like me, enjoy the great resource of an iPhone, there are quite a few vision apps, some of which might be quite useful for this particular issue. Here are some in particular I found interesting:
1. The Ophthalmology Glossary iPhone App – 99 cents – designed for the professional in the field, a student taking a class, or somebody [patient or Sandwich Generation caregiver] who just wants to learn more about the eyes. I appreciated this one as it had a good definition for:
- Macular Dystrophy – "A hereditary type of macular degeneration. In a normal eye, the macula, the central part of the retina, has specialized cells that detect light and color. Macular Dystrophy is a deterioration of these cells so that we see less and less clearly. It is the most severe of the three main Stromal Dystrophies, but the least common."
- Macular Degeneration – "The leading cause of blindness in individuals over age 60. Often called 'rusting of the retina.' There are two main types, dry and wet. The dry or atrophic type is the most common – affecting nearly 70% of all cases – and results as the macula's tissues age and break donw, causing a gradual vision loss. The wet or exudative form of macular degeneration affects 15-20% of individuals with the disease and can significantly damage vision…"
Those were the best and easiest to understand definitions I found on this! I felt this was a useful app for the Sandwich Generation caregiver and purchased it for my iPhone. For some reason, I can't link directly to it, but if you go in to the Shop on iTunes, and then type in, or paste in the word – ophthalmology – it should come up. 🙂
2. Eye Handbook – FREE – While this is primarily geared for eye professionals, it does have sections for patients, including some educational graphics of eyes. I thought it could be quite useful for caregivers to get a better understanding of issues that may come up while caring for elderly parents and have added it to my own iPhone.
3. Amsler Vision iPhone App – 1.99 – "The Personal Amsler and visual acuity test for those who wish to test their vision for distortion, changes in central retinal function as well as visual acuity…Useful for those with normal vision who wish to check for changes over time, or those with central serious retinopathy, histoplasmosis, macular degeneration, diabetes, or any other eye condition. Please check with your physician / ophthalmologist / optometrist for specific suggestions for use." AND to verify with them its accuracy 🙂
It's vital for all of us in the baby boomer generation, as well as the elderly parents we are caring for, to stay on top of any changes in our vision, and have regular annual eye check ups! And it's also good for us to realize there are some excellent low vision resources and aids that can help our senior parents and/or ourselves if and when we do experience any kind of loss of vision. Now that's good news for the Sandwich Generation – both boomers AND seniors. 🙂
P.S. Isn't that a cool 4-D eye puzzle above – great for educational activities for grandparents and their grandchildren! Also, if you go into your Shop on iTunes, and type in (or copy and paste in) the word – ophthamology, you will find numerous podcasts on the subject. I didn't go through them very closely, but if I wanted to do some serious research into a vision issue, I would definitely check those out as well!