Day in and day out I read tweets and other articles online about vitiligo. As I want to keep my followers on top of developments in vitiligo research, I regularly check for updates and any news that may be worth sharing.
But – it’s unbelievable how many social media feeds and search engines filter through information that is actually irrelevant to vitiligo patients.
This ‘information’ is not even at a small scale and over time I’ve watched this ‘bumf’ grow. Amazing ‘cures’, new tablets, creams that have ‘satisfied users world-wide’ …type ‘vitiligo’ into google or twitter and you’re almost guaranteed to come across something of this content.
The majority of us know that saying goodbye to vitiligo really isn’t that simple – and that there isn’t some miraculous cure that’ll simply re-pigment your skin. No matter now nice the thought of waking up without vitiligo is – the reality is that it won’t happen easily.
Scandalous, but do people really believe this rubbish?
Unfortunately yes – people do – and the truth is it angers me. Not because someone could ever hope to trust in the things that might help them deal with vitiligo, but because of the people misleading or even lying to vit-goers for the sake of a few extra sales, followers or merely an increase in web traffic.
So what is this bumf?
I’ve collated my five favourite bumf examples that you’re likely to come across.
ONE > Posts that weren’t what you bargained for
Links for ‘latest vitiligo news’, leading nowhere! Except to, maybe, a haemorrhoid blog, or something similar.
Yep that’s right, there’s always a fair few that have to spoil the ‘information gathering exercise’ or blog /web movement for everyone else. This is done through companies attempting to sell a product or service via their blog (or website) in annoying ways.
The most popular way is when a keyword such as ‘vitiligo’ is tagged in an irrelevant post, misleading us into thinking there is something about vitiligo in the article – when actually, there isn’t. They result in a web optimisation boost and we are left irritated and reading an article about piles.
TWO > Unanswered questions
So you’ve found a promising link that hits the nail on the head of what you’re looking for. You’re click on it….. But after all that searching, there’s either: a) nothing there or b) after reading the whole page, your question is still unanswered. Doh!
a) Similar to point 1, this culprit creates a blog post with a catchy title that’ll lure you in, such as: ‘Want to relieve vitiligo?’ – But when you open the link and load the page, there’s nothing else there! Just an empty post! Again, this is a clever little manoeuvre to get you on their page – and it bloody well works.
b) Although the article discusses vitiligo, the question asked is not the question answered. Back to square one then!
THREE > Cures + treatments that don’t really work
A cure! How exciting! …But don’t be fooled. These new creams or tablets seem promising, but are expensive and the truth is, there is not enough evidence to say that it’ll work. Are the claims endorsed? Are these treatments recommended by your dermatologist? Can they be found at the chemist? If you say no to any of these, I’d think twice about entertaining these web links.
FOUR > Damn right misleading statements
Misleading articles about the steps you need to take to cure vitiligo, how considerate! There’s nothing worse than being lied to and I’m sure I can speak for everybody when I say that vitiligo can be emotionally challenging – without being misled.
- “Vitiligo is treatable!”
First thought: Wow – my GP must be useless!
The reality: In a manner of speaking yes vitiligo is treatable, but it doesn’t mean the treatment you’re using will work. Not only that, but these links usually pummel you with facts that have no standing. Such as:
- “Firstly, you need to eat a balanced diet that contains protein.”
Or there’s a catch:
- “An alternative is to take these pills.”
FIVE > Sites that scare
I had to have this on the list. There are some sites that may scare you into thinking that if you have vitiligo; there is something else wrong with you. This may not be intentional – so don’t worry, but my tip would be not to worry yourself.
A friend of mine with vitiligo made the mistake of self-diagnosing and managed to get herself in to such a state because of the results that came back when trying to identify what’s wrong with her skin. If you’re concerned about your patches, or think your vitiligo may mean there’s something else wrong with you, such as a thyroid problem, see a doctor – don’t take an online diagnosis for granted.
If you come across any of these kinds of sites or articles, don’t be fooled. There are plenty of credible resources out there and if you can’t speak to your doctor or dermatologist check out Vitiligo Support International, Vitiligo Society or any other charity that is focussed on helping people with vitiligo. They have a wealth of information online and are friendly people if you want to pick up the phone.
Most importantly, don’t let these sites fill you with doubt, all vit-goers are faced with the same problems and hard evidence about what works and what doesn’t is hard to find. Everyone is different and what works for one person doesn’t necessarily work for another.
