Always Advocate for Yourself
I have the utmost respect for doctors. Doctors are the epitome of intelligence, passion, dedication, determination, ability and confidence. They’re kind of superhuman, aren’t they? They literally save lives. They preserve vision, restore hearing, and do so many more incredible things.
Doctors are superhumans
Besides that, doctors give us hope. They heal and guide us when we’re sick and weary, and let’s be honest when we feel sick and weary we want answers and relief fast. Doctors give us that, plus we can’t forget they’re also our go-to for weird and gross ailments. They can even keep a straight face while we ask about this bump or that strange smell or why that part of our body is doing something it isn’t supposed to be doing...ahem and wink...asking for a friend. Am I right?
I love my doctors, especially the ones who help me with my vision. I could never thank them enough for all the ways they’ve helped me throughout my life. However, as I get older, I am starting to realize that I also need to trust in the guidance and healing I can provide for myself through intuition and exploration.
Doing my own research
A few years ago, in the thick of a really scary time for me with changes in my vision and the progression of my disease into an actual diagnosis, I started researching vitamin supplement options for myself. I was already taking supplements, but I’m a firm believer that knowledge is power. Especially when you ‘have something’ that doesn’t yet have a cure. I do research and read a lot of articles, and I always find new and relevant information that I feel helps me understand, battle, and feel at peace with my diagnosis.
Relying on the similarities between Myopic MD and AMD
I have myopic macular degeneration (MMD). Unfortunately, there isn’t much research out there on the efficacy of vitamins and supplements on MMD. That being said, MMD mimics AMD (age-related macular degeneration) in a lot of ways, with the main difference in the two being that MMD takes its toll on much younger patients than those who are affected by AMD. Because of the similarities in the two diseases and the lack of research on MMD, I often resort to information and data from studies on AMD to help guide me when researching.
Sensitivity to zinc in supplements
During my research, I noticed various studies on some of the supplements available to people with AMD that I, myself, was taking. Eye supplements often contain an extremely high amount of zinc, along with other vitamins. Data that I stumbled across was showing that about 15% of people taking these supplements were actually harming their eyes, particularly because of the high level of zinc in them.
Would zinc help or harm me?
With the majority of people, zinc in that concentration was found to be helpful (or at least not harmful) to their eyes. Because of that, this information wasn’t immediately concerning for me, but I knew right away that I absolutely needed to find out if I was in that 15% or not.
Disadvantages of having MMD
You see, one of the disadvantages of having a degenerative eye disease earlier in life than people with AMD is that if we choose to take supplements, we are taking them for significantly longer amounts of time than patients with AMD. We are simply in a different stage of life. To me, this means I have to be certain that if I’m ingesting anything in extremely high amounts for many years to come, I want to try to be as sure as I can that I’m not also harming myself in other ways in the long run.
Genetic testing for nutritional supplements
While researching, I came across an interesting and new genetic test that was mostly being given to people who wanted to know their risk for age-related macular degeneration. That information would not be very helpful for me, specifically because I was too young. The results would determine a risk percentage for the age-related disease and would be accurate up to ten years out.
Determined to find answers
In ten years, I’d still be too young for an AMD diagnosis because my retinal degeneration didn’t have much to do with my age, but more how myopic (nearsighted) my eyes were. However, I didn’t give up. After looking into the test farther, I found out that it also gave the information I was seeking about whether or not zinc was helping or harming my eyes.
My retina specialist
Let me remind you, I love my retina specialist. He really and truly is someone I trust, appreciate and have great respect for. He noticed and repaired a torn retina in my left eye, has answered a zillion questions for me, and has calmed me down more times than I can count. He is a gift to me and so many others struggling with vision loss.
A waste of money?
Keeping that in mind, I enthusiastically asked him about this genetic test at a post-op visit shortly after finding out about it, and he immediately shot me down. He didn’t feel like I needed to waste my money on ‘something like that’ (although with insurance, the test didn’t cost me much out-of-pocket). In fact, he told me to, “Buy Christmas presents [with the money I’d save not getting the test done].” But, I wasn’t settled. I needed to know.
Reaching out to my optometrist
Next, I sought help from my optometrist. She has been seeing me for well over twenty years and knows my eyes and my situation well. Interestingly, she had recently heard the same statistics about zinc and the genetic test available at a conference she attended and told me she could easily go through training to be able to administer the test. She did, and I was her very first macula risk swab guinea pig.
And guess what? I’m in that 15%. I was hurting my own eyes with the supplements I was taking and I could never express how happy I was to know that! I can’t even imagine taking high levels of zinc for 40 or 50 years and harming my own eyes without even knowing it.
Quick Tip: I feel that it’s up to each of us individually to determine what is best for our personal and unique situations. I am not advocating for genetic testing or against supplements with zinc. I am, however advising that you trust yourself to know what’s best for you so you can advocate for yourself. Research. Ask questions. Don’t give up if something feels important to you. You only get two eyes and one life.
Be brave enough to know your own needs.
Are you aware of assistive technology for AMD?