'Own your vitiligo, don't let your vitiligo own you"
Vitiligo Support UK
Welcome to the Vitiligo Support UK Website
Registered Charity number 1170557
Welcome to Vitiligo Support UK. We are a patient support charity in the UK, providing free, constantly updated and user-friendly information and support to all those with vitiligo and their family and friends.
Please see below for the latest news:
Your chance to help develop a tool for research!
Researchers and clinicians at the University of Nottingham have previously created the Vitiligo Noticeability Scale (VNS). This is a tool used to assess how noticeable people feel that their vitiligo is, and to assess whether or not treatment for the vitiligo has worked. This tool has been used in large-scale research studies.
However, because the VNS relies upon photographs to monitor changes in noticeability it has not been used in clinical practice. We feel that a ‘static’ version of the VNS that doesn’t rely upon photographs could significantly help people with vitiligo and their healthcare professionals to manage and plan treatments. To help us to translate the VNS measure into a new ‘static’ VNS tool we are inviting people with vitiligo, and parents of young people with vitiligo, to take part in a series of focus groups. In these groups we will discuss how the VNS is currently used and explore how it can be adapted to make it more usable. We held our first focus group in Birmingham on Monday 9th December but plan to hold others in early 2020. We plan to hold focus groups in London, Nottingham and possibly Birmingham again.
Potential dates on which we would hold these focus groups are: Monday 13th January 2020
Monday 20th January 2020
Monday 27th January 2020
Monday 3rd February 2020
Monday 10th February 2020
Depending on people’s availability, we may hold these in the morning, afternoon or possibly in the evening if this is the only time people can attend. An inconvenience allowance and reasonable travel costs will be paid to focus group participants, and lunch will be provided.
If you are interested in taking part in a focus group at any of the above locations, please state the location, date and preferred time (for example: London, any date, mornings).
Dr Jonathan Batchelor and Dr Paul Leighton
Centre of Evidence-Based Dermatology, University of Nottingham
The University of Manchester is researching what the general public know about Vitamin D and how we metabolise it through our skin. They’ve got a survey to answer, take a look and join in the research by following the link here: https://web.capitasurveys.co.uk/SunExposure/
Don’t forget though that Public Health England advice on Vitamin D is that it’s not possible to build it up through sun exposure or diet between October and April in the UK. During these months PHE recommend taking a supplement of 10 micrograms daily.
JAK-1 and JAK-3 Inhibitors come to trial for vitiligo patients in the US: Pfizer are recruiting patients for a trial of oral JAK inhibitors and are looking for both non-segmental vitiligo, and also patients with active vitiligo. There’s more information here: https://www.pfizer.com/science/find-a-trial/nct03715829
Results are not due to be published until December 2020, and it’s Phase 2b of research meaning that it’s still at the stage of investigating if Pfizer’s theory about the drugs, what they will do, their side effects and what the best dose might be to treat vitiligo are correct, and there will be at least one more stage before it might be licensed for patients to receive in hospitals or clinics. This also means we are still a few years away from seeing one or both of these drugs on the market.
There’s a new specialised Vitiligo clinic taking place at Guys & St Thomas’s in London and run by Dr John Ferguson, referrals to the clinic take place from General Dermatology which should be your first port of call.
Check out our Skin Support Resource which gives information on managing some of the moments we all have when we struggle with the impact of our vitiligo. This advice is specific to the UK, and if you’re experiencing very low mood or feelings you’re find hard to manage please contact your GP, or the Samaritans available 24/7 on 116 123 Skin Support resources
Also take a look at the British Association of Dermatologists’ website for patients with skin conditions which contains a lot of useful information and support
We’re on Instagram sharing photos and comment, news stories and more – look out for us @vitiligosupportuk