Vitiligo has a major communication problem that I feel obliged to fix.
A good vitiligo specialist is hard to get by. Few could name a researcher or two. And unlike tech giants like Amazon, Apple or Netflix, almost nobody would recognize names like Temprian Therapeutics, TeVido BioDevices or Villaris Therapeutics.
However, these biotech startups have been firing up the imagination of vitiligo researchers, Big Pharma and angel investors alike. Even though most people aren’t aware of it, vitiligo biotech area is now so far advanced that a prolonged vitiligo-free life is becoming not just possible but mostly doable within the next decade or less. I wrote about this in the previous newsletter.
For the vast majority of us, what’s under the hood – namely, a white lesion – is just too scientific and bone-dry subject to be bothered with. It shouldn’t surprise anyone that nerds like me are one of only few diggers in this area.
My Gen X is notorious for getting what it wants, no matter the effort. From about the age of six, whenever I look in the mirror, my own vitiligo stares right back at me. For about the last ten years, I dig deep and share my findings with fellows like you. And so I am delighted to come to the World Vitiligo Day 2019 conference – actually all three of them: in Houston (USA), Hanoi (Vietnam) and Shymkent (Kazakhstan) – to meet some of the brightest minds in vitiligo.
Temprian Theraputics, for example, is working on bringing a DNA-based treatment of vitiligo to clinical trials. The newly expanded team hopes to speed up drug development and FDA approval to beat others to the market. If you’d be in my shoes, you’d want to hear what Kettil Cedercreutz, company’s CEO, has to say, no matter on- or off-stage in Houston (registration is closed now but if you kindly ask Diane Wilkes-Tribitt, she can probably make an exception.)
Prof. Michael Tirant from Australia is one of keynote speakers in Hanoi that I may miss on the stage due to my late flight arrival, but hope to catch the next day, on June 25. His plant-derived medicines for vitiligo seem to be working well for some patients, and I’d like to know more about it. By the way, we shall all be thankful to Michael for his incredible support to the WVD conference in Hanoi.
And, of course, Dr. Aliya Kassumkhanova from Shymkent, without whom the World Vitiligo Day celebrations in the Central Asia would not have happened at all. Aliya’s willpower and determination made this cozy town in the middle of nowhere a go-to center for vitiligo treatments in the entire region. Her unconventional and gentle treatment approach makes patients enjoy the longest vitiligo remission period – up to 8.5 years – we have seen to date.
This is just the tip of the iceberg of the upcoming events. However, I don’t want to let this newsletter get too long, so I’ll tell you more about other panels and speakers in coming emails.
I hope you will join us at one of these events.
P.S. World Vitiligo Day T-shirts are available in limited quantities, free of charge - you just cover the shipping cost!
- I have vitiligo: will my children have vitiligo, too?
Children born to parents who both have the disorder are more likely to develop vitiligo. However, most children will not get vitiligo even if one parent has it. In children wit...
- How can I explain vitiligo to my children?
Vitiligo can be puzzling for a child because a person who has it isn't "ill" in a common sense. To choose the right words to explain vitiligo diagnosis to a child, first consi...
- Which skin conditions can be mistaken for vitiligo?
Vitiligo is a common skin condition with characteristic milky white patches of irregular shape. However, several other skin conditions exhibit similar symptoms that can lead to ...
Our work is entirely funded by private donations – we receive no money from government. Your money will help us continue funding research into vitiligo and supporting people affected by the condition.
Though it is not always easy to treat vitiligo, there is much to be gained by clearly understanding the diagnosis, the future implications, treatment options and their outcomes.
Many people deal with vitiligo while remaining in the public eye, maintaining a positive outlook, and having a successful career.Copyright (C) Bodolóczki Júlia
By taking a little time to fill in the anonymous questionnaire, you can help researchers better understand and fight vitiligo.