Many people living with vitiligo will go a long time without meeting another person with the condition, which can lead to feelings of isolation and loneliness. Many people also cover their vitiligo or avoid social occasions – meaning it can be very difficult to gauge if there is anyone else in our social circle affected by the condition.
As a community we often see slogans about people living with vitiligo as being part of the ‘1%’. We also frequently refer to the prevalence of the condition by stating that 1 in 100 people are likely to have vitiligo – but whilst these figures have been used for a number of years, do we know where this number comes from? How accurate is it? Is vitiligo really a ‘rare’ condition? Or are there in fact more people around us living with vitiligo that we think?
Could we be part of the 8%?
There have been a number of studies around the globe over the past 25 years. Studies have looked at the prevalence of vitiligo in different communities, numbers varied with an estimated prevalence of anything from 0.1& to a huge 8% of the global population.
Which such a large difference in numbers, in 2012 there was a review worldwide of the prevalence of vitiligo in children/ adolescents and adults, conducted by Kruger, C and Schallreuter, K.U1. They identified more than 50 studies that used several methods and subgroups of the general population. On reviewing these studies the team determined that the prevalence of vitiligo ranged from 0.06% to 2.28% in adults and 0.0% – 2.16% in children/adolescents. The conclusion of this research was that ‘the often cited prevalence of 8% could not be confirmed’, and that the ‘worldwide prevalence of vitiligo ranges between 0.5% and 2%’.
Are we actually part of the 0.5%-2%?
Further studies appear not to have contradicted the figure proposed but Kruger and Schallreuter, but rather sought to investigate whether prevalence was higher in any population subgroups.
In 2017 prevalence of vitiligo was concluded to be evenly distributed between male/female populations, in addition there was no difference in frequency identified in reference to skin type or ethnicity (Plensdorf, 2017)2.
However, things aren’t quite that simple. In 2020 Bergqvist3 concluded that variations reported in prevalence rates may be due to higher reporting where social and cultural stigma are common, or where vitiligo patches are more evidence in darker-skinned people. So arguably we could be under estimating the prevalence of vitiligo amongst groups that are fairing more positively with the condition – either because it goes undiagnosed, or they are not seeking treatment for it.
Is vitiligo really a ‘rare’ condition?
Vitiligo is often referred to as a rare skin condition in literature and by support groups, however according to the UK Rare Diseases Framework4 a rare disease is defined as ‘a condition which affects less than 1 in 2,000 people – making vitiligo far from being considered ‘rare’ if it does in fact affect up to 2% of the population.
So, what can we take away from this? If you thought that you were part of the ‘1%’ then actually you might be part of the ‘2%’ so potentially there are twice as many of us out there as we usually think! Furthermore, vitiligo is not actually as rare a condition as many of us assume, so even if you think you are alone, it’s statistically likely that someone in your wider social circle is also affected by the condition – perhaps a work colleague, or a friend of a friend. Even walking down a busy street its likely you might be passing another person affected by the condition without even realising.
- Kruger, C. and Schallreuter, K.U. (2012) A review of the worldwide prevalence of vitiligo in children/adolescents and adults. International Journal of Dermatology ↩︎
- Plensdorf, S., Livieratos, M. and Dada, N. (2017) Pigmentation disorders: diagnosis and management. American Family Physician 96(12), 797-804. ↩︎
- Bergqvist, C. Ezzedine, K. (2020) Vitiligo: a review. Dermatology ↩︎
- https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework ↩︎