Over the years, I have received a wide array of questions about my disability. Though sometimes this can be uncomfortable, I always prefer people asking me questions rather than keeping silent and jumping to conclusions based on assumptions (which trust me, happens more than you think). Therefore, I have collected 10 of the most asked questions so you can learn a bit more about Stargardts and life with vision loss.
If you have any other questions concerning my condition, please feel absolutely free to drop them in the comments section!
Q1: What do you currently see?
By far the most asked AND most difficult question.
My vision is currently somewhere around the 18%, with my left eye being the dominant one. My whole visual field is blurry, especially in the central portion, where I see a constant flickering, circular noise (‘my blur’ 
). I like to compare the haze to a badly developed photo or the noise on an old television screen.
Light circumstances and color contrast significantly influence what I can see. High contrast and non-artificial light help optimize my remaining sight. My up-close vision is also impaired, though I do see objects more sharply when I hold them closer to my face.
Q2: Will you go blind?
No, the chances that I will go completely blind are very low. My condition technically only affects the central portion of my vision, though some cases have been reported in which patients also lost their side vision. The hazy spots I already have can turn grey or black, meaning that I am at risk of losing my color perception. The long-term prognosis is widely variable, but most patients eventually reach the stage of legal blindness, with a visual acuity of 20/200 or lower.
Q3: Do you experience any other symptoms other than blurred vision?
Unfortunately, yes! I am very sensitive to light and my eyes need more time to adjust to different light circumstances. I use different kind of (sun)glasses depending on the light intensity. Because my eyes consume a large amount of energy, I also tend to get very tired when I have to focus on something straight ahead.
Nonetheless, I find the mental implications of living with an unpredictable, progressive condition the worst. I have struggled majorly with anxiety and lived in denial for many years. Though such symptoms are often not listed on medical sites, I would highly recommend any newly diagnosed individual to seek professional support.
We may not be able to fully control the course of the disease, but we can learn techniques that help us manage the complicated emotions that come with the loss of bodily functions.
Q4: Is there a cure?
No, there is currently no cure. I can only take certain actions which help slow down the degeneration process, such as:
-
- Wearing sunglasses and hats at all times to protect my eyes from harmful sunlight
-
- Not taking high doses of vitamin A. I avoid vitamin A ‘bombs’ such as carrots, sweet potato and liver.
-
- Avoiding cigarette smoke. The research on this is not yet conclusive but some evidence has suggested staying direct and secondhand smoke can accelerate the deterioration of my eye cells.
Fortunately, researchers are currently investigating various gene and drug therapies that could treat symptoms. Especially the drug metformin and stem cell therapy seem promising. If you wish to donate to research, please visit the website of your national eye institute! I would be beyond thankful !
Q5: How old were you when you got this?
I was 16-years old when I got diagnosed. Just like the prognosis, onset of symptoms can vary greatly. The majority of patients with Stargardt start losing vision in childhood or early adolescence, but some don’t’ develop symptoms until their thirties.
At the time of diagnosis, I had already lost 50% in one eye and 70% in the other. My guess is that I started losing vision around the age of 10-12, but somehow didn’t notice it until a significant portion was gone. I did experience a lot of fatigue during secondary school, but I never linked this to vision loss.
Q6: Do your parents or siblings have it?
No, fortunately my two brothers don’t have it! Neither do my parents, but they are both carriers of the unhealthy gene copy (i.e., the recessive mutation) that causes Stargardt. However, unlike mine, their DNA also contains the healthy, dominant copy of the gene, which prevents the condition from being expressed. It just so happened that the egg- and sperm cell that created me both contained the unhealthy copy *.
Remember…?
(* Egg & sperm cells contain half of our genetic information, that is, 23 chromosomes; one strand of the 23 PAIRS that reside in our other cells. Put simply, each strand of the pair carries a variation of the same gene and one variation can be dominant over the other).
Q7: Why do you wear your sunglasses so much?
Oh, I have been gifted the name ‘sunglass girl’ (or diva…) so many damn times.
Wherever, I go, they come. They serve in first place as a means of protection against harmful UV rays. I have medical filter lenses in my sunglasses from the brand Essilor. Thee filter out the most harmful UV rays and augment the contrast so I can distinguish more objects.
In second place, my sunnies help me manage my light sensitivity. I have 3 types of sunglasses (with different lenses), each designed for a specific weather condition. If I don’t wear my sunglasses, I can get headaches and dizziness from all the squinting.
Because I also wear sunglasses when it’s cloudy, I have been frequently called a ‘diva’ and even arrogant. In the past, this sometimes withheld me from putting on my sunglasses. I really hope that this website can also serve as an education platform about visual disabilities in order to reduce feelings of judgement and shame.
Q8: Do normal glasses help?
Funnily enough, yes, they do! A bit. They add about 10% to my vision. Technically I do not have any issues with my ocular lenses, but the glasses help converge the light onto a more functional part of my macula. I cannot wear them very long though, as they tire my eyes enormously and make my light sensitivity worse.
I find it very important that people learn that somebody who wears glasses doesn’t necessarily have complete vision. This is a very common, but problematic misconception. I am still visually impaired, even with them on.
Q9: Will you ever get a guide dog?
If my vision gets to the legal blindness stage, then yes, absolutely! I would definitely prefer having a guide dog over a white cane. I love animals with all my heart and believe firmly in the benefits of assistance animals and animal therapy.
I currently only use a symbol cane, which is a smaller, thinner cane that indicates to my surroundings that I have a visual impairment. I have lovingly called her ‘Kansas’, named after the band that created one of my all-time favorite songs, ‘Dust in the Wind’.
Q10: What do/will you miss the most visually?
That’s a no-brainer: the faces of my loved ones and my animals. Not being able to fully perceive their faces (or my own) hurts on a deep level because it has so much emotional value. I also truly miss not being able to perceive facial expressions (unless somebody stands very close) as you cannot deduct all emotional communication from somebody’s voice. Third, I am very gutted that I cannot spot and see wild animals anymore, such as dolphins in the sea. I have a strong passion for wildlife and I find the visual variety in animals beyond intriguing. I have tried to teach myself how to enjoy their presence through sounds and smells – a skill I would love to pass on to you, reader
