Happy World Vitiligo Day! It's time to let our flags fly and live the emotions that we feel in the depths of our being.
Before I share with you my excitement about the World Vitiligo Day 2018 conference we just wrapped in Boston, I must tell you about our meeting at the United Nations the day before. We're slowly navigating the complex web of spoken and unspoken rules of the UN's Economic and Social Council to get to our ultimate goal: an official recognition of the World Vitiligo Day by the UN General Assembly. There are no official guidelines on "How To Make World <something> Day" at the UN, so we're building up our case and collaborations now.
Now back to the conference, held at University of Massachussets just outside of Boston. The theme this year was "Children, Research, and Hope for the Future." Dr. John Harris and Valarie Molyneaux deserve special recognition, yet we should also thank Tiffany Grant, Barbara Hamilton, Erika Page, Patricia Roissy, Alicia Roufs, April Sawyer, Lee Thomas, among many awesome volunteers who contributed to this outstanding event.
Passionate speakers were equally impressive with presentations on "Parenting Child With Vitiligo" by Dr. Lisa Schuster, "Enigmas of Childhood Vitiligo" by Dr. Pearl Grimes, a collective Research Update moderated by John Harris, and unlocking the Dead Sea secrets by Dr. Aliya Kassumkhanova.
International guests, like Jean Marie Meraunt from Paris, France shared his perspective on vitiligo, Nunu Galot from the London, UK exposed prejudice towards vitiligo, while Marilynn Burch-Harvey came from Edmonton, Canada to learn how to start a support group.
If you missed the live broadcast, watch the recording on YouTube: Day 1 (4 hr. 30 min) and Day 2 (2 hr 50 min). My hat off to the IT and support team at UMass for their seamless integration of all high tech tools you can think of.
We tend to think less of our abilities and we discount our success. No more! We did it for seven years in a row, against all odds. The World Vitiligo Day is our day. Let's celebrate today!
My best, as always,
- Who is prone to vitiligo?
Scientists know that some people are genetically predisposed to a specific group of autoimmune diseases – including generalized vitiligo – but do not know who and why.It doesn’t...
- Is there a special diet for vitiligo?
We have specifically looked into claims that some food supplements or special diet may ease symptoms of vitiligo, or completely reverse it, and found no firm scientific evidence...
- Vitiligo and hearing loss: any connection?
In short, NO. Recent research shows no relationship between a degree of skin depigmentation and hearing loss severity in vitiligo patients. The results of this study showed tha...
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.