Last Updated on 16th April 2024 by Caroline Haye
Pigment loss and vision
I was just a toddler when my vitiligo started. My parents had no idea what the small white patches were that appeared on my skin for no apparent reason. The tiny areas of discolouration on my spine and ankle bone were mysterious, to be sure. But no great cause for concern. However, when one eyelid became inflamed, lost its normal colour and several lashes turned white, my mother became anxious and took me to the doctor. The diagnosis was one she had never heard of before… Vitiligo, a supposedly harmless condition that removed pigment from the skin. It was untreatable but nothing to worry about, or so the doctor told her.
Still, she obviously was worried because I can remember her anxiously asking lots of questions. Some of them struck me as bizarre at the time… Like, will this condition turn my daughter’s brown eyes pink like an albino’s? The doctor told her this was unlikely, which I don’t think was as reassuring a reply as she had hoped for. She also asked if my hair would turn white. The doctor said it might, and that my eyebrows might also lose their colour. I don’t think it occurred to my Mum to ask, can vitiligo affect eyesight? If she had, the doctor would probably have laughed at the very idea. After all, this was the 1960s and he, in common with the rest of the medical profession at that time, had a very limited understanding of the condition, only ever mentioning its impact on skin.
Vitiligo is not just a harmless skin condition
For generations doctors told their patients that vitiligo was just a harmless skin condition. The general consensus was that it only affected skin colour and was therefore a purely cosmetic issue. (And a minor one at that). Of course, we now know that vitiligo involves other systems and organs throughout the body, not just skin pigment. And that it also has associations with other chronic inflammatory and autoimmune diseases, like thyroid disorders, pernicious anaemia, alopecia areata, rheumatoid arthritis, type 1 diabetes and lupus. Aside from which, the psychological and social effects of the pigment loss alone can be utterly devastating. So it is far from the truth to claim that it is just a harmless skin condition, even though many doctors still seem to cling to that outdated view.
Thankfully, there is a much greater understanding of it today than there was when I received my diagnosis. And this understanding is increasing all the time as more funding goes into finding more effective treatments. But vitiligo is a complicated condition that continues to challenge medical research, due to the many variable factors involved. And, judging by the scientific literature, fully understanding its impact on our eyes is still a work in progress. However, here is a quick overview of the known facts…
Melanocytes under attack
The vitiligo process involves disruption to the normal functioning of pigment-producing cells called melanocytes. Genetic, autoimmune and, in some cases, chemical / environmental factors are the cause of this disruption, which can turn into an ongoing attack on these cells. But the loss of skin (and hair) colour is just a visible symptom of the disease. It is not the whole story. And the reason it isn’t the whole story is because the cells being attacked don’t just produce pigment. They do lots of other things as well.
In fact, melanocytes are found throughout the body and are tirelessly multi-tasking, performing a wide range of functions, any of which may potentially be affected by vitiligo. For example, damage to the melanocytes that located in the inner ear cavity (cochlea) can occur, leading to a degree of hearing loss in some individuals. This affects approximately 12% – 38% of people with vitiligo. And it is a similar story when it comes to our eyes.
How does vitiligo affect the eyes?
Melanocytes are present in both the retina and uvea (including the iris) of the eyes. And vitiligo sometimes targets these in the same way as it attacks our skin pigment. Research suggests that this is more likely to occur in individuals who experience depigmentation around their eye area – a common site for vitiligo lesions. When vitiligo attacks the cells in the eyes, not only can it potentially lighten eye colour but it can also lead to inflammation of the retina, uvea and iris. (Retinitis, uveitis and iritis respectively.) When this happens symptoms typically include dryness, discomfort, light sensitivity and vision disturbances. And, in the absence of timely treatment, there can be serious consequences, like glaucoma, nyctalopia, macular degeneration and even total sight loss in some cases.
If this all sounds alarming, well – it kind of is when you look at it in the context of the “harmless skin condition” story that served as conventional wisdom for so long. But, as ever, it is important to keep the risks in proper perspective. Gradual or total sight loss with vitiligo are mainly confined to two very rare autoimmune disorders called Vogt-Koyanagi-Harada syndrome and Alezzandrini’s syndrome. So the overwhelming majority of people who have vitiligo will never experience such extreme symptoms.
So, should I be worried about vitiligo damaging my eyes?
In my case, the skin surrounding both eyes lost pigment at an early age. And, as I described earlier, one eyelid became inflamed and some lashes turned white. Not only that, but these symptoms remained well into my fifth decade, when the pigment finally returned. So you might expect my history to have put me in a higher risk category for eye damage as compared to others with no vitiligo near their eyes or a shorter duration of pigment loss. But my eyesight remained good (until age finally dictated I should use reading glasses). And my optician has always given me a clean bill of health. So I hope this reassures you that having vitiligo in the eye area – and having the condition long term – are not a cause for undue concern.
Obviously, eyesight is fragile and precious thing. So it makes sense to value and protect it. But the facts suggest that serious sight impairment is a rare consequence of having vitiligo and generally only happens when affected individuals persistently ignore their symptoms without getting treatment. So the most important eye care tip for anyone with vitiligo is simply to be aware that an increased risk of eye problems is a possibility and have regular eye check-ups to catch potential problems early. (Bear in mind though that you may need to give your optician a brief explanation during your examination as to why your vitiligo may be relevant, since I’m guessing that for the majority of high street practitioners the subject might not even be on their radar.)
4 thoughts on “Can vitiligo affect eyesight?”
Thank you this article. I was 40 when I first started seeing signs of vitiligo. Prior to that, I never had issues with my vision or hearing. In addition, Light sensitivity is now overwhelming. I stopped going to doctors after being told the condition is harmless.
I’m so sorry to hear about your light sensitivity. It is such a shame your doctor has been unhelpful. But maybe you could get a referral to an ophthalmologist about the eye symptoms?
Thank you so much for writing this story. I was first diagnosed with Vitiligo at the age of 23 (now 45) – I had full loss of pigmentation (apart from inside of elbows) within two weeks of it appearing and my hair, eyelashes, and eyebrows all turned white. I lost 80% hearing by age 28 and suffer with terrible tinnitus constantly. I was fortunate to have a operation through private healthcare at work to reverse this but had no idea it could have been connected to my vitiligo. I also suffer from dry eyes, am sensitive to bright light or sun which often ends up with a headache, of late I have some vision problems, however, my mother has suffered with Glaucoma in her later years.
Collette Lee
I am so sorry to hear how fast your vitiligo developed and how much it has affected your hearing and eyes. Yours is obviously a good example of how vitiligo is definitely not just a cosmetic issue. Thank you for sharing this – it helps to raise awareness and educate others about a condition that is still so poorly understood by most people, and even by many doctors.