Newsletter November 2016
Sunshine. Reading. Friends. Happiness.
November 26, 2016
In this month’s newsletter, we’re taking a break from our regular mix of scientific news.
Instead, I’m going to suggest some reading matter to you. Because, with the days getting shorter and chillier in the northern hemisphere, we all want to curl up on a sofa, with a blanket, a glass of Glühwein, and a good book.
Just before I do, a small warning – don’t forget to get outside in the sun when you can, even if it’s cold. Lack of sunlight is linked with low vitamin D levels, which in turn is linked with vitiligo. Also, a lack of sunlight can lead to depression – a new research paper published last week confirms that more sunshine equals more happiness.
Sorry, I can’t help myself – I’m straying into scientific talk again! Back to the reading – I’ve got two suggestions for you:
Firstly, a good read that will also put you in the mood for a good walk. This piece by Henry Thoreau, initially published in The Atlantic back in 1862, brilliantly extolls the virtues of walking in the outdoors, surrounded by nature.
Secondly, I want to share with you a random chapter of my first book, No-Nonsense Guide To Vitiligo. I’m certainly not bracketing myself with Thoreau here but – if you have vitiligo or have any interest in the condition – I think you’ll enjoy it.
But, before we get to that, a short story:
I recently found myself wandering the narrow streets of Jerusalem with Prof. Torello Lotti and his beautiful wife, Anna Maria. After wrapping the Master Class on Vitiligo in Palestine, we had rushed out to see the holiest places of the Holy Land.
A couple of days before, Torello had volunteered to look over my new book but remained uncharacteristically quiet about it. This made me nervous (had I screwed it up?) but I kept my insecurities to myself.
We finished our journey at the West Wall at dusk, and drove back to the hotel. At this point, I couldn’t help myself — I asked Torello how his reading was going. He looked at me, smiled, and said: “I’ve never read anything like this. It’s a mix of autobiography and scientific paper. A very powerful mix. I can’t wait to read the rest of the book.”
And now – dear friend – I’d like to share a short sample with you, too. Let me know what you think.
I shall also remind you about the upcoming meeting in Rome on December 4th, where the theme is ‘Working Towards Common Action At The United Nations’. The Winter Consensus conference only takes place every four years, so is well worth attending. Registration is free and I invite you to join your friends and colleagues, and decide upon the future of the vitiligo community. Check out the final program here.
Is there anything particular you’d like to see covered in the newsletter? Or a theme you’d like to read more – or less - about? If so, please let me know – I’d love to hear from you.
And, if you are enjoying these newsletters, please forward this email to a friend and suggest they sign up. The more people we reach the better!
With my best wishes.
Chapter INVISIBLE PEOPLE
How many people have vitiligo? Let’s say we invite everyone with vitiligo to celebrate World Vitiligo Day on June 25th at Mitad Del Mundo - the tall granite monument near Quito, Ecuador, that straddles the equator. With unobstructed views of both hemispheres, this is a suitable place to measure numbers for this global condition, which affects all races, ages, classes and sexes.
With just enough space to breathe, you can fit about ten people on a square meter. On that basis, the amusement park that surrounds the monument can hold about ten million people. But, we’ve still only accommodated around 10% our expected guest list. So, we’ll start lining everyone up along the equator line, holding hands together. We’ll build hypothetical bridges over oceans and tunnels through mountains to make a clean line. Eventually, our imaginary guest line goes around the whole Earth and gets back to Mitad Del Mundo, like a mythological Great Serpent eating its own tale in an eternal cycle of life. In total, there’s approximately 100 million people at this imaginary vitiligo party.
This makes vitiligo twice as common as Obsessive Compulsive Disorder - a well-known mental condition casually referred to as OCD. The number of vitiligo sufferers is larger than those with hepatitis C, which the World Health Organization has called a ‘viral time bomb’. It is also significantly higher than the number of people with AIDS. It is about the same as the number of people suffering from psoriasis. The chance of a senior developing vitiligo is twice as high as Alzheimer’s disease and fifteen times higher than Parkinson’s.
Nonetheless, vitiligo is still neglected. For example, a mandatory Food Allergen Labeling Act helps people with celiac disease to identify dangerous ingredients, yet – for the twice as many people with vitiligo - there are no warning signs on products that may worsen their condition.
MYTH BUSTED: ‘Vitiligo is a rare disease.’ Far from it - most likely, there are more than one or two with vitiligo in your circle of friends on Facebook.
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
What is coming?
The Step Up for Vitiligo Gala
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11th session of the Conference of States Parties to the CRPD
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