Newsletter Mid-August II – Bits and Pieces!

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Research news!

If you’ve not picked it up via our home screen, the Hi-Light trial is still recruiting participants, via a hospital that may well be near you.  This trial is investigating the effectiveness of home-based treatment for vitiligo, and needs your support.  Take a look at their link that’s right here, to see how to sign up.

And if you don’t already know about it, the NHS has a web page that has a list of current vitiligo studies going on.  It’s worth checking it out every month to see if there’s any research programme going on that you can take part in.  Currently it’s only showing the Hi-Light trial in the UK, but others may become open to participants over the next twelve months.  The site and search engine can be found here.

Sunscreen!

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In case you missed the stories on Twitter and here!, you can now buy a sunscreen on Amazon that was created by Dr. Andrew Birnie, consultant dermatologist and dermatological surgeon, who specialises in skin cancer.  We’ve tried it, and it’s great, easy to rub in and a soft texture.  We’ve also used it on our face, and it doesn’t sting the eyes or leave a greasy residue.  

You can read more about it on their Facebook page, and also buy it online at Amazon.  We think that it’s a really good price for a very high quality, high UVA rated sun screen – see their Amazon details here.  Don’t forget that you can buy a litre bottle as well!

Overall the advice for those with extensive vitiligo is to keep out of the direct sun, especially between 11 and 3, and to use a good quality sunscreen, hats, sunglasses, shade and clothing to protect those vulnerable patches.

If you’re looking for a really good value sunscreen, check out this article from Money Saving Expert about deals on sunscreen.  Please do check though that it’s 30SPF or over, and that it’s UVA/UVB rating are high – there’s more explanation in the online article here.

You also need to take care, not only in a soft-top car, but also of sunlight coming in your car windows.  A study was done in Los Angeles that found that the UVB protection in the front windscreen was consistently high, but the protection offered by the side windows was much more variable.  The study details are here. 

We also found information from Cancer Research UK, that advises us to wear sun protection as, whilst your car may protect you from the sunburn and redness from UVB rays, it doesn’t give you as much protection from UVA rays, which can also cause skin damage.  Read more about it here. 

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You can buy film to cover the windows with and gain better UVA protection, but the recommendation appears to be that it’s best fitted by an expert.  This article may give you more advice.

 

Nutrition

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We hope that you’ve had a chance to read the page on nutrition by now!  We noticed on the Vitiligo Society Facebook page someone recommending that a vitiligo sufferer took turmeric.  We wanted to repeat the advice on turmeric that we have on our page, which is that a small study showed that eating turmeric both advanced patches and also impeded progress of treatment.  The link to the study can be found here.  It is a very small study, but it’s worth trying taking it out of your diet, as it’s not a main nutrient source so not dangerous to cut out.

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We also found news in the New York Times about what the writer calls ‘the whipsaw effect’, when one week you are told something is good for you, only the next week it becomes a lethal substance to be avoided at all costs.  It highlights the difficulties in pursuing research in dietary areas, and makes for an interesting read.  

Don’t forget the advice on vitamin B contained on our nutrition page, and check out this round up from the Dermatology Journals which confirms that a small study showed that B3 may have a protective effect against skin cancers.

Yoga

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If you have a chronic disease (or four!) you’ll know the really important need for mental wellbeing and balance, alongside trying to treat or manage your physical ailments.  

One of our Medical Advisory Board members, Dr Mahto, is a keen practitioner of yoga, so we found some introductory sources for us all to try.  

It doesn’t have to be hot and sweaty, or a class full of skinny, competitive women, it can be a peaceful way to stretch and reconnect with your body.  And we all need that, if we have vitiligo.

We were interested to read The Guardian’s analysis of all the different types of yoga out there.  The writer also runs classes in the Kings Cross area of London.

Then we were recommended to take a look at Yoga with Adriene, who has a YouTube channel and also posts on Twitter here.

Finally if you go to a gym, check out their classes and see if you can try out a beginner’s class free.  

 

 

Newsletter Mid-August 2016 I

WELCOME TO VITILIGO SUPPORT!

We’ve put together our first newsletter and want to welcome all our new Twitter followers – over 140 in just seven days, thank you, and those lovely friends who’ve joined us in the Facebook group!

welcome

This newsletter covers:

Some important Vitiligo research news

Sleep!

Feeling good about yourself and

Camouflage or not – a tricky question

SOME IMPORTANT VITILIGO NEWS

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1.A Research Update:

A piece of research was reported by the British Association of Dermatologists on Twitter this week.  The research expanded on some work previously done on vitiligo in mice.

This identified the importance of CXCL10 (more information on this in Wikipedia) in the progression and maintenance of depigmentation in mice.

This study, undertaken on a group of 80 patients with vitiligo, and a control group of 40 people who did not have vitiligo, showed that  serum CXCL9 and CXCL10 were significantly elevated in patients with vitiligo and were higher in patients in progressive stages than in stable stages,

The CXCL10/CXCR3 axis mediates T-cell recruitment into the skin in progressive vitiligo.

Blocking this chemotactic mechanism (the movement of an organism in response to a chemical) may present a new form of therapy. Serum CXCL10 may be a novel biomarker in monitoring disease activity and guiding treatment of progressive vitiligo.  

T-cells are a type of white blood cell and play a central role in cell-mediated immunity or the immune reaction of cells to an external “threat”, whether from bacteria, virus or cancer.  

So the researchers are hopeful in being able to identify when vitiligo is progressing and to guide where treatment should be targeted, and maybe in the long term to produce a type of treatment that works on this ‘chemotactic mechanism”.

The study can be found under the following reference:

Wang, X. X., Wang, Q. Q., Wu, J. Q., Jiang, M., Chen, L., Zhang, C. F. and Xiang, L. H. (2016), Increased expression of CXCR3 and its ligands in patients with vitiligo and CXCL10 as a potential clinical marker for vitiligo. Br J Dermatol, 174: 1318–1326. doi:10.1111/bjd.14416

2. Vitiligo patients and Hypo- and Hyper-thyroidism

The recent newsletter from Vitiligo Support International (no relation!) carried an article on the link between vitiligo and either an over- or under-active thyroid.   Their Summer Newsletter can be found here.

Here are their important recommendations, taken from research studies undertaken over the last eleven years in the area of vitiligo and its correlation with thyroid disease.

If you are concerned that you or your relative with vitiligo shows any of the symptoms shown in the article, please see a health professional.

Taken from the Summer Newsletter for the Vitiligo Support International charity in the USA

Research, Facts, and Recommendations

The risk for those with vitiligo of developing Auto Immune Thyroid Dysfunction (AITD) disease has been found
to be 2.5 times higher than in the normal population.

The risk of developing elevated thyroid antibodies has been found
to be greater than 5 times higher than in the normal population.

It’s possible that “thyroid autoimmunity might play an important role
in triggering and maintaining the depigmentation process of vitiligo.”

Source: 2015 review of vitiligo and thyroid diseases conducted in Florence, Italy
Review recommendation: Vitiligo patients should be screened for AITD

The following symptoms may indicate an increased probability of developing AITD:
Higher body surface area of involvement (widespread vitiligo)
Experienced stress as an onset factor
Family history of AITD
Duration of disease: The risk of developing AITD doubles every 5 years after a vitiligo diagnosis.
Source: 2013 Belgian study of 700, and French study of 626 of non-segmental vitiligo (NSV) patients
Recommendations from both groups: NSV patients with any of these symptoms
should be regularly monitored for thyroid function and thyroid antibodies.

There is an increased incidence of AITD among pediatric and adolescent vitiligo patients

Source: 2013 study performed in the Netherlands on 260 pediatric and adolescent vitiligo patients
Study Recommendation: Screen for thyroid function and antibody levels
in all pediatric patients with non-segmental vitiligo.

 

SLEEP

Across the world it’s been hot and sticky, making it harder to sleep.  Whilst we can’t help you cool down enough to sleep well, we’ve found some great things to help you get off to sleep.

The first is this amazing podcast.  It’s called the “Sleep with me” podcast.  

You do have to get past the first few minutes which are usually an appeal for funding to keep the podcast going, and then…well, to be honest, I’ve never managed to stay awake longer than about four minutes, so I really have no idea how the podcasts end.  It’s his voice.

I appreciate that if you’re sleeping with someone else, they may not want to join in listening and he also recommends these speakers, which I haven’t tried, but might be worth a go!

http://www.sleepwithmepodcast.com

The pillow speaker 

You might also find this song, by Marconi Union, to be, as a study has recently determined, the most relaxing song ever.

And finally, Harvard Health published some useful tips on beating anxiety to get a better night’s sleep – these can be read here.

 

FEELING GOOD ABOUT YOURSELF

We hope soon to have an interview with the lovely Kristen who is a health and fitness manger for a national chain of health clubs, and who also has vitiligo.  He talked to me on the phone about it bothering him when he was a child, at school, but when he took up weights and getting physically stronger and fitter, the degree to which it bothered him grew much less.  He felt confident in his own skin, because he knew that objectively that he was strong and that he could be resilient.

A study recently published showed that his subjective experience was right.  If a group of women were asked to focus on their body’s functionality – the things it could do – they were later had greater body satisfaction than the control group who just thought about a neutral task.  The researchers thought that this intervention “could be a beneficial individual-level technique that women can use to protect and promote a positive body image in the face of thin-ideal images.”

 

Keep thinking of all the amazing things your body can do, and not just about vitiligo!

TO CAMOUFLAGE OR NOT?

Ever since a really bruising experience talking about camouflage at a conference, and putting forward the apparently controversial idea that I would like money to go into psychodermatology as well as us concealing ourselves from others, I’ve tried to keep out of the debate.  Sadly, since that time, there are no more psychodermatology clinics in the UK available to coach, encourage, and help those of us with disfiguring skin conditions.  

Then, on Twitter, I discovered these stories.  The first comes from Rachel Anderson, a lovely American lady, who puts the debate on covering or not covering up so much better than I did at that conference.  She is on Twitter as @Beautymarked22 and has a website at http://www.beautifullymarked.com/category/about-me/

She wrote this awesome blog post which you can read for yourself here.  As she says, make your own decision and feel comfortable about it.  Even if there are days when you’d like to cover everything up!

I also really like this manifesto from the very lovely Erika at the gorgeous site, LivingDappled.com all about vitiligo and a positive message for us all.

This is fab!

So have an amazing week, hope that you stay safe in the sun and enjoy the summer.  We look forward to you joining us on Twitter @VitiligoUK and on Facebook https://www.facebook.com/groups/VitiligoSupportUK/!