TIPS FOR ARTISTIC PEOPLE

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Eodem modo typi, qui nunc nobis videntur parum clari, fiant sollemnes in futurum.

Newsletter September 2016

What’s new newsletter sept cat?

Take care of your eyes!

newsletter sept eye

A small study has found that people with vitiligo may also be more prone to problems with their eyes, specifically with a condition called ‘dry eye’.  You may have seen information about this recently in the press because Jennifer Aniston has been talking about it.  Read more about the study here.

And see Jennifer talk about her dry eye condition and how she treated it here.

What we’re doing next…

1.newsletter sept clinuvel

Next week we are going to meet with Lachlan Hay, Head of Global Network and Communications at Clinuvel AG.

Clinuvel are progressing to trials in America of its drug, Scenesse, which has shown very promising results as a combined therapy with phototherapy to treat and restore pigment to patients with vitiligo.

I will report more when I’ve met with him, but for the time being you can hear more about the US trials, and if you live in the US  your chance to participate, on this podcast

http://vitiligocover.com/how-can-you-participate-in-the-scenesse-fda-trials/

 2.newsletter sept samaritans

We’re also meeting with the Samaritans in the second week of September.  We wanted to talk to them about how they run their e-mail helpline, and whilst this is in fact run by a third party and not volunteers, they said that they would ” be happy to meet you and provide you with some thoughts based on our current service – nothing in heavy detail, but I think it’s good to share information and experience, and to build relationships within the sector.”   It’s nice when people are open to exploring ways in which they can help you!  

It would be good to feel that we are taking a first step towards providing a real service to people with vitiligo – many people cope with their vitiligo without a second thought, but there are also many of us who have a crisis in confidence – before a big social event, when meeting a lot of new people, going on holiday when you’re going to be in a swimsuit, going for job interviews!  

There are a lot of “how to” or “self-help” guides out there, for example produced by Changing Faces or on the British Association of Dermatologists’ psycho-dermatology website, but they are all for you to read and then to action yourself, and there appears to be a gap in the market to offer online help by email to people with vitiligo when going through those crisis points.

The two websites we’ve referred to above can be found through the links below:

Changing Faces Self-Help Home Page

British Association of Dermatologists’ Psycho-dermatology resources

3.Newsletter sept BAD

We’ve been confirmed as the patient representative to help do a review and rewrite of the Patient Information Leaflet for vitiligo produced by the British Association of Dermatology – it looks like the Vitamin D advice needs to change in line with the government’s advice on supplements for everyone recently released.  Take a look at the current version of the PIL here.

4.newsletter sept charity commission

We gained our third trustee and signed off and submitted our application for charity status.  We have no money, but don’t want to follow a familiar model in our sector of charging a large amount for membership, and then using that money for things that don’t directly benefit people with vitiligo.  We’d rather have no membership but a group of people working together for the things that really matter to people with our skin condition.  We will keep you updated on how we get on!  

Going to see your GP

newsletter sept 2016 doctor

 

We thought it might be useful, ahead of the development of our app, to go through some questions you might want to ask – of both yourself and your doctor – before you go to see a GP about your vitiligo, and when you are there.  Remember that most GPs have only done a small amount of dermatology training in their 

Key Questions

If you are not yet diagnosed, before your GP appointment, ask yourself:

  1. Is the appearance of your white patches something recent (in the last 3-6 months)?

                                                   Patches that have developed recently are easier to treat than older patches

You can still however seek treatment for older patches, and access other services to help you with your skin condition, and its impact on you

  1. Does any other family member have vitiligo?

If yes, you are more likely to have developed vitiligo too

 If no, your doctor may explore other options for the cause of your patches with you first

    3. Do the patches burn in the sun and not/never develop a tan?

If yes, you are more likely to have vitiligo

 If the patches re-pigment – that is, get a tan again – this is unlikely to be vitiligo, and may be a fungal skin disease that will clear up with treatment

  1. Are the patches symmetrical?

If yes, it is likely to be the most common kind of vitiligo called non-segmental vitiligo

 If no, it may still be vitiligo, but a different type, called segmental

  1. Does your vitiligo upset you or cause you concern?

The disease can be very upsetting because of the changes it makes to your appearance, and you should seek help if it has a significant impact on you

You can seek both talking and online therapies via your GP

Online support groups for vitiligo also exist – check out ours at https://www.facebook.com/groups/VitiligoSupportUK/

At Your GP

Questions to ask

newsletter sept tablets

After the diagnosis is confirmed:

1. Do you want to have treatment?:

 

Ask if you can please be referred to a consultant dermatologist

Like most NHS services, dermatology is under pressure and your GP may think that other skin diseases should be prioritised over you

You should not be responsible however for rationing NHS services.  It is therefore important that you explain that you would like to receive phototherapy, and that you understand that if the disease is treated early in its progression there is a very good chance of getting your pigment (skin colour) back again.  Treatment using Narrow-Band UVB is a good option for regaining pigmentation

The study that supports this is a report by A. Sasase, C Hihiro Honda and K Hayashibe Of the Shibata Clinic of Dermatology, Osaka at The XXIst International Pigment Cell & Melanoma Conference, 2011

Your GP may want you to try a topical steroid or calcinuerin inhibitor first.  You can try these but make sure you give them a set amount of time to work (three months) and then return to ask if you can now be referred to a consultant dermatologist.  Topical creams are not as successful in treating vitiligo as NB-UVB

Light treatment is usually only done in the NHS, so it is not helpful to get a private referral to see a dermatologist

newsletter sept hospital

2.  Do you need sunscreen for your patches?:

You can ask your GP to prescribe you sunscreen

There are three types of sunscreen available for people with vitiligo, and they are available as a drug rather than an optional item.

The wording of the British National Formulary makes it clear that because people with vitiligo are ‘photo-sensitive’ they are entitled to receive sunscreen on prescription

The three types available are Uvistat Factor 50; L’Oreal Ant’helios Factor 50 and Sunsense Factor 50

The Sunsense product comes in a 500ml pump

Treatments7sunscreen

3.  Do you have any symptoms of thyroid disease?:

Research shows that people with vitiligo have a 2.5x higher risk of thyroid disease than the general population

This article produced by Vitiligo Support International has a list of symptoms for both over- and under-active thyroid

Ask your GP about your risk of the disease and if you need a blood test 

4.  Do you need psychological support?:

newsletter sept flower psych

 It is very common to feel unhappy about your patches, and their erratic progress across your skin

If you think it would be helpful to talk to someone about your feelings and get some help, ask your GP to be referred for counselling, or access online counselling via this link.

You will find more online resources to help you manage your feelings or anxiety about the condition in our “Treatments” section of this website

There are also a number of support groups on Facebook that can help you with your feelings about your vitiligo, including ours!

And finally… 

IMG_1128

IMG_1129

We started this charity nearly two months ago.  Most people we knew from our role at our previous organisation have been amazingly generous in wishing us well (apart from the actual previous organisation, that is…).  

We’ve started to grow a following on Twitter, written four newsletters and made a beginning in having a group on Facebook.  We’ve, most importantly, designed and got in stock some ‘talisman’ cards for people with vitiligo.

However many meetings I go to, or lovely people who include me in projects, or people who treat you as if you are normal, there is still the inescapable fact that I have vitiligo – all over my face, hands, arms, feet and legs!  When you go out and about, you do so in the knowledge that lots of people will take a second look at you, and either give you that pitying smile (mostly middle-aged ladies) or scornful sneer (young beautiful women, mostly guilty of this).

In the long term, we would like to develop the charity so that we can provide an email counselling/helpline for people with vitiligo.

In the short term, these talisman cards might help you with your confidence.

They are definitively not designed to make you challenge and verbally attack people who stare!  I was accused of this by someone in the past and I want to be clear about it now.

They are designed to have in your wallet, purse or pocket.   You can keep them there, to give you a quiet confidence, or you can use them to start a conversation with someone and tell them something about your skin condition.

Carry them around with you, and know that we have your back.  

Know that we are an organisation that understands how you’re feeling when those kids turn around in their tracks to watch you go past.  

Know that we understand what it’s like when the person opposite you on the train surreptitiously takes a photo of you on their phone.  

Know that we understand that you have days when you feel like just staying in and not going through the stares.  

We understand that you might want to camouflage some days but other days you just want to have your natural skin out.

We understand that you don’t necessarily want someone to say “Oh your skin has got worse” or “The vitiligo on your face has grown a lot” or “Your vitiligo is a lot worse than mine” because we’ve had all those comments, and more, from people who should know better.  These cards say, we’re standing by your side and we know what you’re going through.  That’s why we’re here.

You can get these cards via Ebay, where they only cost £1 + postage for 20 cards.  All the money will go to the charity and its future projects, and not to funding premises or administration.  

And have a great week ahead of you! Stay safe in the sun if there is any where you are, and check back soon for our next newsletter.

Follow us on Twitter: @VitiligoUK

Join us on Facebook: https://www.facebook.com/groups/VitiligoSupportUK/

 

Newsletter Mid-August II – Bits and Pieces!

paint

 

BB1-bits-and-pieces

 

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!

sun15

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. 

softtop

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

nutrition4

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.

whipsaw

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

yoga1

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

news

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.

https://www.youtube.com/watch?v=3RI3yU–Gw0

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/!