2018 Bulletin : Treatment, supplements, MeetUps and more

Posted on March 5, 2018 by admin

I’m afraid that last year passed in a bit of a blur, and there weren’t many newsletters written. However we also :

Took part in the British Association of Dermatologists’ Research Sub-Committee – I’m going to call them the BAD from now on!;

Started running MeetUps for vitiligo, every month, in London and elsewhere;

Got Vitiligo Support UK recognised by NHS Choices, so that we’re now listed as a source of support on their website!;

Attended as the patient representative at the UK Committee for Translational Research (UK TREND) at the BAD;

Took part in the Patient Engagement Intiative at the BAD alongside the amazing Amanda Roberts from Nottingham Support Group for Carers of Children with Eczema;

Built up our Facebook group, Twitter feed and started out on Instagram as well – it’s really good to connect with everyone with vitiligo via social media and to share news and experiences with you there

Became involved in the Centre for Appearance Research’s latest project on Acceptance and Commitment Therapy, coming soon to a phone screen near you!,

Met the amazing Lotte Bateson and spoke at her conference, Skin Matters, alongside John Warne from Psoriasis Help and Simon Oates from Mind & Skin, and

Contributed to the Phototherapy Guidelines now published by the BAD, and are currently working as one of the patient representatives on the Treatment of Vitiligo Guidelines.

So, this is the first of hopefully several newsletters for 2018 – though worried that just saying that means that a tsunami of other things are now heading our way preventing us from writing….

This Newsletter

In this newsletter we’re going to cover:

Treatment update

Supplements

MeetUps

Thyroid Disease

TREATMENT

In February 2015 the Cochrane Review undertook a systematic review of all research studies into vitiligo. Whilst this feels like a while ago now, the overall message from the review bears repeating, especially as it is a message that we’re all familiar with, having vitiligo, and maybe other chronic diseases.

One of its important messages is to acknowledge the difficulty in treating vitiligo. Part of this difficulty comes from a lack of complete understanding as to what causes the disease (although both genes and auto-immunity are likely to be involved), and in part because it is a tenacious disease in itself.

Therefore, if a treatment works, the risk of your vitiligo coming back and making your re-pigmented patches white again is very high.

You can read the Cochrane Review in full by clicking on this link.

The important points to note about the Review of treatments, and subsequent studies undertaken in vitiligo, are that:

1. NB-UVB light remains the main, successful treatment in tackling re-pigmentation of patches

2. Light treatment can be even more successful if it is combined with another topical treatment (one you put on your skin) or oral treatment, and the study looks at the following as an treatment alongside UVB: steroid creams, psoralen (usually with UVA), calcipotriol (a vitamin D derivative), azathioprine (an immunosuppressant) and oral prednisolone (a steroid). All of these are only available on prescription, and should not be taken unless under hospital supervision.

3. If you are offered light treatment, do make sure you have a conversation with your dermatologist about the possibility of combining the treatment with a topical one as well – take a look at the Cochrane Review for the evidence to support this.

4. There was some evidence that taking Gingko Biloba orally as a supplement helped stop the spread of vitiligo, and had some success in helping re-pigmentation when used with light therapy. As this is a product available to everyone through health shops, Amazon and some chemists, this might be worth a try yourself. I was told by a consultant that he advised patients to take antioxidants as a supplement because of the possibility of strengthening your body generally, and thus stopping the progress of your vitiligo, but there’s no clinical trial that has looked at this specific question yet.

As always hope for a cure remains high, and as a result there are two new treatments that people are watching and are interested in.

The first is ‘Afamelanotide’ or ‘Scenesse’. Please note that this product is not yet trialled or licensed to be used for vitiligo, and is actually a treatment for another rare skin disease called ‘ erythropoietic protoporphyria’.

In addition, you cannot buy Scenesse from its makers, and the base ingredient, afamelanotide is not commercially available. If you buy a product saying it contains afamelanotide or melanotan-I then this is not true, it is something else, possibly dangerous to your skin and health, and you are putting your skin at risk by using it.

In the long term it may be that this will also prove to be a good treatment for vitiligo, but we are probably still years away from that.

The second are a class of drugs called Janus Kinase Inhibitors, or JAK inhibitors. The action of these drugs is to stop the action of Janus Kinase enzymes which are believed to be responsible for inflammatory action in the body’s cells, specifically in the joints, causing arthritis and potentially also in the pigment cells. There haven’t yet been large-scale trials of the JAK inhibitors, but re-pigmentation has been seen in a few patients taking the oral drug, on the face, and a proper trial is now being recruited for and initiated in the USA. Read more about JAK inhibitors from Dr John Harris, the tireless supporter of vitiligo patients in his research and practice, here.

SUPPLEMENTS

It’s almost impossible to eat right, every single day and meet all the targets that are set for your vitamin and mineral intake. This section is not medical advice, but information on some supplements that you may find useful.

With any supplement, if you have pre-existing conditions, please take medical advice before taking them, and ensure that you read and follow any printed instructions with the product.

Don’t forget that we’re still in the winter period here in the UK, when even the UK government recommend that we take a daily supplement of Vitamin D. If you have vitiligo, cover your patches with clothing or sunscreen in the summer, and generally avoid the sun, then you should consider taking a Vitamin D supplement for the entire year. You can get Vitamin D tablets from most chemists and on Amazon.

If you’re read the section above then you’ll know that, alongside your Vitamin D, at least two things could be on your list.

The first is a good antioxidant. One example of a very powerful antioxidant is Alpha Lipoic Acid, which has a protective effect against free radical damage in your cells. It can be found on Amazon, for example Solgar offer it for sale in 200mg vegetabs.

Secondly, you may consider taking Gingko Biloba as a supplement. Gingko has been used as a supplement for a long time, and is meant to improve both memory and vision, and, according to the research, may also stop your patches spreading.

Finally, it’s worth considering adding a multi-vitamin and mineral to the mix, to cover things like magnesium that you’d have to eat a lot of sardines to make up yourself naturally!

MEET-UPS

It’s been really great to meet you over the last five months, over coffee and having a chat about all things vitiligo. One of the things that came up at our last MeetUp was the incidence of thyroid disease and vitiligo, and our Factsheet on Thyroid Disease is in the next section.

We have more MeetUps coming across the year, the next will be in April (the March one has been cancelled), and will take place in Brighton, on 28 April. Details of the venue will be posted in our Facebook group, on MeetUp and via Twitter and Instagram.

Come and get some support, share some of your experiences, and meet other people with vitiligo – plus get coffee! Hope to meet you soon!

THYROID DISEASE

What is Thyroid Disease?

Your Thyroid Gland produces two substances called triiodothyronine (T3) and thyroxine (T4), in response to a stimulus from the Pituitary Gland. T4 goes on to generate T3, and this in turn affects your metabolism and has an impact on what happens in all the cells in your body. When the Thyroid Gland is damaged or over-stimulated for any reason, Thyroid disease follows.

There are two types:

Hypothyroidism: this is the most common type of thyroid disease and occurs when your Thyroid Gland is under-active and cannot produce enough T3 for your body’s needs. People with this condition must take replacement thyroxine for life.

Hyperthyroidism: this occurs when your Thyroid Gland is over-active and produces too many thyroid hormones. People with this condition can be treated in a variety of ways, but the most common is to take an anti-thyroid medication, usually for life.

There is a table of symptoms for both diseases below.

What is the link?

Whilst it is known what happens in your skin if you have vitiligo (the disappearance of your melanocytes causes white patches of un-pigmented skin to appear), why this destruction of your pigment cells happens isn’t fully understood.

However, a lot of experts believe that vitiligo is an auto immune disease, which means that it is caused by your own body attacking your melanocyte cells.

This appears to be confirmed by a link between vitiligo and other auto immune conditions. Amongst the auto-immune conditions associated with vitiligo is thyroid disease.

What is my risk?

If you have vitiligo, you have a 2.5 times higher risk of developing Auto Immune Thyroid disease than the general population, because of the auto-immune nature of both vitiligo and thyroid disease.

The risk of developing elevated thyroid antibodies (which is the step before thyroid disease has developed) has been found to be greater than 5 times higher than in the normal population. In a U.K. study, patients with vitiligo were 34% more likely to have thyroid disease as well as their skin condition.

When should I take action?

Be aware of the increased risk of thyroid disease for you if you have vitiligo. Symptoms can however be easily confused with other conditions. Use the Resources below and the checklist of symptoms that can be found here and on the British Thyroid Foundation’s website, to see if you need to see your G.P and request a blood test.

Symptoms of HYPOTHYROIDISM (under active)

Symptoms of HYPERTHYROIDISM (over active)

In brief, the symptoms for you to be aware of for hypothyroidism include:

tiredness
weight gain
depression
being sensitive to the cold
dry skin and hair
muscle aches

In brief, the symptoms for you to be aware of for hyperthyroidism include:

hyperactivity
mood swings – such as anxiety, irritability and nervousness
difficulty sleeping and feeling tired all the time
muscle weakness
needing to pass stools (faeces) or urine more frequently
excess fats in your stools – which can make them greasy and difficult to flush down the toilet
sensitivity to heat and excess sweating
unexplained or unexpected weight loss – despite having an increased appetite
infertility
loss of interest in sex

As you can see these symptoms can also be experienced with other conditions, so be aware it might not be thyroid disease causing them.

What tests are done to check?

Your GP should be aware of the increased risk of thyroid disease for patients who already have vitiligo.

The test will be a thyroid function test. This looks at your levels of thyroid-stimulating hormone (TSH) and thyroxine (T4) in the blood. TSH is the hormone that automatically regulates your thyroxine and triiodothyronine in your body.

A high level of TSH and a low level of T4 in the blood could mean you have an underactive thyroid.

If your test results show raised TSH but normal T4, you may be at risk of developing an underactive thyroid in the future. In this case, you may need to return for a repeat blood test a few months later.

If it is found that you have either condition, you will then need to take medication to correct the imbalance, in all likelihood for the rest of your life.

More information can be found here:

NHS Choices website: hypothyroidism

NHS Choices website: hyperthyroidism

Hope that you all have a great 2018 – find us on Social Media as well!

2017 Bulletin One

Posted on February 18, 2017 by admin

The February Bulletin!

Face Equality Day 2017 is coming soon!

We went to a great meeting on 15 February at the offices of Changing Faces, where we met up with Henrietta Spalding, their Head of Advocacy, and representatives from Lupus UK, CLAPA, SkinMatters 2017, the Katie Piper Foundation and the Birthmark Support Group.

It was a meeting to be briefed on their plans for the first ever Face Equality Day on May 26 2017 – we are really pleased to be invited to support this, and will be getting more information to you as it becomes available. It’s a day to put in your diary to show support for everyone with a visible difference, even if you are able to conceal your affected skin under clothing, there are many, young and old, who are really affected by vitiligo’s presence on their faces and hands. This story confirms that it has an impact even though it’s an amazingly positive story overall, it has clearly caused some moments’ thought to Dean

More information about Face Equality Day is available here

Gene research run by Dr Richard Spritz of the University of Colorado and Professor Dorothy Bennett of St George’s hospital, London

Dr Spritz has been researching the genetic basis of developing vitiligo for over twenty years. In Ocotber 2016 Dr Spritz reported the results of the third study, which compared those affected by vitiligo with a control group, and involved a number of European participants.

The results allowed the team to identify twenty three locations on the human genome that are newly linked to susceptibility for vitiligo.

When added to the two previous studies this meant a leap forward in understanding the disease, how it originates and has the potential to allow new and more targeted treatments to be developed.

A very interesting interview between Dr John Harris, another champion of vitiligo research and the treatment of patients at the University of Massachusetts Medical School, and Dr Spritz can be found here.

This is an enormous piece of work, taking over twenty years to complete, and with huge implications for people with vitiligo. As Dr Spritz says in the interview, understanding properly what causes vitiligo would allow targeted treatments to be devised, and may even allow the medical profession to identify who is at risk of the disease and how to prevent it beginning its inexorable progress in those identified individuals.

It is also interesting to see the identification of vitiligo alongside other auto-immune disorders, and amongst others Dr Spritz mentions Addison’s Disease, autoimmune thyroid disease, Type 1 diabetes, pernicious anaemia and systemic lupus erythematous. We were lucky to meet a representative from the Patient Support charity Lupus UK, and are pleased to share their weblink here, so you can gain more information on this condition: LUPUS UK

Patient Support and Information for the other diseases we mention above can be found as follows:

Interview between Dr Harris and Dr Spritz

More cellular research on where the source of vitiligo and psoriasis are located in skin cells

cells

This complex piece of research undertaken in Sweden (full references are contained in the article itself) looked at where skin disease activity originates. It looked specifically at the role of cells called tissue-resident memory T (Trm) cells. These are contained within the skin and provide localised (at the source of the infection) protection against pathogens, such as viruses or bacteria, or, in the case of vitiligo, auto-immune attacks on the melanocytes in the skin.

The research showed that human skin contained Trm cells that performed differently in response to different stimuli. Vitiligo cells responded to inflammatory cytokines (substances produced by the immune system – hence the concept of auto-immune diseases) by accumulating ‘activated, perforin- and granzyme-expressing CD49a+ Trm cells’.

This is a complex article and hard to understand as a layperson but their closing comments may bring some hope (for the long term) to those of us with the disease : “Further insights into the dynamics of the composition, retention, and activation of expanded, functionally specialized Trm cell populations might contribute to improved management of both infections and chronic inflammatory skin diseases.”

Sun Screen, Fake Tan and the Summer Months

selftan

It’s only February but if you’re anxious about exposing your patchy skin it feels like summer is just around the corner.

First of all, don’t forget that if you have vitiligo, defined as a light-sensitive condition, you are entitled to get sunscreen on prescription, as a drug and not as a borderline substance (with which there have been issues in the past). There are three brands available on prescription, which are Uvistat, L’Oreal Ant’helios and Sunsense. All are factor fifty, and based on a mineral sunscreen, usually titanium dioxide.

There is a letter available on our Facebook group and attached here GP letter sunscreen 2017 that you can print out and take to your GP to gain support for your request for a prescription. If you pay for prescriptions then it may be more economical to buy them yourself, for example from Amazon.

You can buy Altruist there, for a reasonable price, and which also donates to Under The Sun, a charity providing help and support to children with albinism in Africa. Other sunscreens are also available, and the decision on what product suits you should be made with care for your skin.

Whatever sunscreen you purchase needs to:

Have at least four stars UV protection,

Not be less than factor thirty SPF,

Be put on thickly, fifteen to twenty minutes before you leave the house and

Be frequently re-applied when in the sun and after swimming.

The British Association of Dermatologists contributed to the article attached here, which advises on sunscreen generally. As you will see in the interview with Dr Spritz above, there is a protective effect in the genes of people with vitiligo against developing melanoma, however this isn’t fully understood so isn’t a licence to burn your skin, and there are other types of skin cancer which you are still at risk of developing.

When it comes to fake tans, it took me a while to understand why I couldn’t get fake tans to work on my skin. Whilst I was at another charity they undertook a study into skin stains and their effectiveness but they won’t tell you the results by named product which renders it….not terribly useful to the desperate vitiligo sufferer who wants a product to tone down some of the contrast on their patches!

However the general principles of a fake tan are that the product works on the interaction of a chemical called DHA with dead skin cells on the surface of your skin to produce melanoidins. This diagram shows you the science behind it (apologies if you’re all scienced out by now!) Chemistry-of-Fake-Tan-2015

So it may be that you just can’t produce those melanoidins in the reaction part of the process? Or that some areas of your skin can and others can’t, so that you get a patchy result. If you’re like me, and find fake tans just don’t ‘take’ on your skin, an alternative nay be an instant tan, a product that stains your skin in the short term and washes off within twenty four hours or longer.

Two examples are the St Tropez product Instant Tan and Garnier No Streaks Bronzer Instant Shimmer but we are not making a recommendation of either product, and other products are available that may suit you better. Whatever you choose, do practice before you go away on holiday, and whilst you can still wear your results under clothes in case it doesn’t go quite as smoothly as you planned! Many people recommend a mitten to apply the product (a special one for fake tans, not a woolly one!) and most articles on this subject recommend that you exfoliate and moisturise around twenty four hours before you start the process.

Finally, whilst you are still able to wear long sleeves and jeans, make sure that your skin is well-moisturised for the summer. Find a moisturiser you can afford to put on every day, when you get dressed or before you get into bed, and keep it out where you can see it and remind yourself to put it on. There are lots on the market but a thicker consistency may produce better results. It’s worth repeating the government’s warning about the use of aqueous cream as a moisturiser which can be found here.

Talking to you and sharing experiences

We’d love to hear from you and to share your experience of vitiligo with others. We have a standard interview format of around fifteen questions and the opportunity to share your tips about dealing with vitiligo, from sunscreens that have worked well to handling stares and comments, we welcome your participation. If you’d like to be interviewed for our next newsletter, contact us at info@vitiligosupport.org.uk. We hope to hear from you!

Wishing you the very best with your skin over the next few weeks until our next newsletter is out – thanks for your support of the charity and everyone with vitiligo.

News from the frontline

Posted on January 6, 2017 by admin

Happy New Year!

First of all, a very Happy New Year to you all. Let’s hope that 2017 isn’t quite as turbulent as 2016 and that we all survive to the end! We had some good times and some bad in 2016, like most people, but most excitingly we gained registration as a charity with the Charity Commission of England & Wales, which we hope will allow us to go on building those strong relationships with other charities, organisations and individuals who support all of us with vitiligo.

We had officially designated January as the year’s suckiest month, but then lots of things started happening! We’d like to share them with you, because they really require your participation and we hope that you will be encouraged by how much work is going on out there to support those of us with a visible difference. Also we hope to meet some of you in March at the SkinMatters conference detailed below.

Have a great January, only 26 more days until February, or less if you’re reading this later in the month, how great is that!

1. Changing Faces

First of all, this amazing charity has provided support to everyone with a visible difference for twenty five years this year. Happy Birthday to them! They are in the course of gathering evidence about how your skin disease or condition impacts on how you live your life, via a very important survey. Please would you help them by completing it? It’s a very important gathering of evidence. to allow them to lobby on our behalf to make changes to how people with a visible difference get treated in the workplace, in the healthcare setting and in daily life.

The link can be found here and the closing date is 28 February:

http://www.changingfaces.org.uk/dituk

2.The University of Sheffield

The University of Sheffield has more friends of vitiligo, in particular in its psychology department, where we’ve been given particular support by Dr Andrew Thompson both in the past and present. They have a study they’re doing in online self-help and would like your participation. Here’s their advert for the study:

We would like to find out whether a self-help intervention is effective for adults with a visible skin difference. The self-help intervention aims to help people build their confidence in social situations.

This study is being conducted by researchers from the Department of Psychology at the University of Sheffield. If your confidence in social situations is affected by your visible skin difference and you are aged 18 or over and interested in taking part, please click on the link below. This will take you to the study website, where you can read more information.

The University of Sheffield- study website

If eligible, you can choose to take part, and will be asked to complete a set of questionnaires. These will be repeated once during the course of the study, to see whether the self-help is effective. You will receive the self-help intervention as a PDF document either straight away or after a waiting period. If you know someone else who might be interested in taking part, please feel free to forward this link.

3. SkinMatters

This organisation is planning a fantastic conference taking place in London on 25 March, and using as speakers some people we’ve worked with in the past, including Professor Chris Bridgett, Kerry Montgomery, Barbara Page and Dr Alia Ahmed. It’s an all-day event, with excellent speakers, and including lunch & refreshments costs £32. We are very excited to be involved in the patient support element of the day. Please come along and learn more about managing your skin.

The link for booking can be found here:

The Autumn is here!

Posted on October 4, 2016 by admin

October Update

What we’ve been doing!

In September, I went to meet with Lachlan Hay, Head of Global Network and Communications and Akash Bhagawati, the Communications Manager at Clinuvel Pharmaceuticals Limited. It was very interesting to catch up on what’s happening with Scenesse, and to chat about the world of vitiligo in the UK and beyond. Plus they gave me some really useful tips on starting out as a patient support charity in this area, always gratefully received, and I’m very grateful to them for their time and all the information they shared with me.

Most importantly for vitiligo patients, Scenesse® is still in development as a possible treatment, and so isn’t available to patients right now, in any form. It has been developed for a condition called erythropoietic protoporphyria (EPP), a disease which causes severe reactions to UVA and visible light. Further trials for it as a re-pigmenting agent in vitiligo have yet to take place and trials are likely to be in the United States next. Check out this interview with Lachlan here with more information about the drug, and the trials.

SCENESSE® contains Alpha-Melanocyte Stimulating Hormone (α-MSH). This is a naturally occurring peptide hormone which is released by skin cells in response to the stimulation by ultraviolet radiation (UVR). α-MSH has a very short half life (seconds) in the blood stream, sufficient to reach and stimulate other skin cells (melanocytes) which in turn produce and release melanin, a dark brown pigment.

SCENESSE® is delivered via a tiny implant that’s put under the skin in one place on your body. It’s approximately the size of a grain of rice – I was lucky enough to hold a placebo implant in my hand! It’s good they made it very clear it wasn’t the active drug as I would have been tempted to steal it…

Increased pigmentation of the skin appears after two days and lasts up to two months. It is most effective in those people with a darker skin – Fitzpatrick Types 5 & 6.

I think that the next decade for vitiligo will involve enhanced treatments at the very least, and hopefully, through a better understanding of the cause of the disease, scientists will work closer to an eventual cure. It’s interesting that drugs that work for other conditions have also re-pigmented people, and Scenesse is just such a drug. We wish it every success in the next stage of the drug trials.

Future Plans

One of the discussions we had was about what I planned to do with the charity. At the moment, I’m waiting for registration with the Charity Commission, which I hope will then enable us to build up the charity to provide services, particularly for young people and for those who struggle with the condition.

At the moment we don’t have subscribers paying money to the charity, as I don’t want to have reserves which aren’t used for any specific project or for research towards a cure or improved treatment. What this means though is that we have no money, but we are very principled! Not sure if that’s a good thing…

However one of the first things I’d like to do is to start a proper patient-led database, available to others online, of treatment they’ve received, consultants they’ve seen and with a rating and feedback on how the consultation worked for them. Watch this space!

The Samaritans

Clearly at the moment, given that the only resource I have is me and fellow trustees, we’re not in a position to run a support line ourselves. So I went along to a meeting with The Samaritans at their head office, which is also conveniently located near where I live!, to hear about the service they provide to people struggling with life and needing a listening ear.

If you check out the BAD’s pages on psychodermatology you will see that they have the phone number for The Samaritans as an option for calling if you feel overwhelmed and low. It’s important to know that The Samaritans are there for you, even if you think that you’re not suicidal so not ‘bad’ enough to call.

The service they run is extraordinary, run entirely at the frontline by volunteers: people who give up their time and energy to offer a helping hand to others in crisis. Often they face abusive or time-wasting calls but they go on, day after day and night after night, extending a hand to those who need someone to walk with them for a few steps of the way.

They also run an email service, which can be useful if you want to think things through on virtual paper rather than have an immediate response. If you email, it can take a while to get a reply, and you won’t get the same person replying to every email you send, by dint of how the system works. The Samaritans are reviewing their online service at the moment so things are about to change.

It’s also useful to point out that all calls and emails are ‘anonymised’ so nobody can see where you are calling or emailing from.

I’m hoping that we can work alomgside another charity to develop a relationship with The Samaritans, to provide specific training on the issues that can arise for people with a skin disease, so that they are ‘skin ready’. That’s in the long term. In the short term, if you are struggling with the impact of your skin disease it’s important to seek help, either through your GP or through the resources available now online. Check out our newly-updated section on treatments for more information.

Summer is now over in the UK, officially. However, because we have a perverse climate, it’s gone on being sunny, so don’t forget the importance of sun protection if you’re out and about, and brave enough to be in short sleeves.

The government here has now officially stated that, even if you are a normal person, with a normal level of sun exposure, you are not able to synthesise enough Vitamin D on your own account during the winter months, and recommends supplementation for all. If you wear high factor sunscreen, as recommended for those with vitiligo, it is possible you need to supplement all year round – do get your Vitamin D levels checked at your GP or dermatology appointments as deficiency can cause health problems. It’s also important to note that it’s not possible to get sufficient Vitamin D from the foods that you eat.

The report on Vitamin D can be found here.

Hope that you have a good autumn, our next newsletter will be out shortly – we are doing some interviews with people with vitiligo and hope to start with the very lovely Emily Sayer, a supporter of ours in Australia!

We are also grateful to the amazing Maryrose Kiomali for letting us join her Support Group on Facebook connecting with more people with vitiligo in Australia.

Look after your skin!

Newsletter September 2016

Posted on September 3, 2016 by admin

What’s new ?

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.

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.

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.

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.

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:

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

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

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

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

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…

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!

Posted on August 14, 2016 by admin

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.

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

Posted on August 7, 2016 by admin

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

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.

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/!

Staying Safe in the Sun: sunscreens on prescription

Posted on July 26, 2016 by vitiligoukblog

sunshine-300

If you are in England and Wales, you may not know that you can get sunscreens on prescription from your GP.

You may have read the Daily Mail’s rant about people doing just that, and been put off?

But here’s the deal if you have vitiligo.

doctor
When you go to see your GP, and have vitiligo extensively, for example on your hands, feet and face, you are entitled to ask for one from a small range of sunscreens to be prescribed for you.

The information on this can easily be found in the British National Formulary, which is the prescribing bible for GPs. It is currently in Section 13.8.1.

The Daily Mail is right, usually sunscreens are what is called a “Borderline substance”, leaving it to the discretion of each doctor to see if there’s a case for prescribing.

EXCEPT! they “are regarded as drugs when prescribed for skin protection against ultraviolet radiation in abnormal cutaneous photosensitivity resulting from genetic disorders or photodermatoses, including vitiligo ..“` That’s my highlighting, but vitiligo is definitely first on the list.

This means that the Advisory Committee on Borderline Substances has given authority for doctors to prescribe.

Please ask your GP politely but do be assured that you can get sunscreen.

They may need to write ‘ACBS’ on the prescription to indicate that there’s approval to prescribe.

The recommendation is for all sunscreens to be 30SPF or over.

Here’s the ones you can get (pictures are illustration only and you may get a different product on prescription):

Anthelios® (L’Oréal Active) for example:

sunscreen loreal

Sunsense® Ultra (Crawford), for example:

The 500ml pump has been available and is an economical option if you pay for prescriptions.

You can get small bottles to decant it into in Boots, and then carry some around in your bag or briefcase or pocket.Uvistat® (LPC)

sunsense 50

Uvistat® (LPC), for example:

uvistat

The full advice from the British National Formulary can be found here

Overall the best advice is to:

Stay in the shade as much as possible

Avoid the sun between 11 and 3

Wear clothes that protect your skin

Stay safe in the sun, protect your vitiligo, and good luck at the doctors’ getting the sunscreen that you both need and are entitled to! Let us know how you get on

VitiligoSupportUK

Vitiligo Update No. 1

Posted on July 25, 2016 by vitiligoukblog

Late July 2016

THIS EDITION

IS ABOUT MANAGING STRESS AND WHAT TO DO WHEN THINGS IN YOUR LIFE GO COMPLETELY PEAR-SHAPED…

First of all, welcome to the first newsletter of Vitiligo Support UK. We are a new charity, and hoping to establish ourselves as a source of information, help and encouragement to anyone with vitiligo. Follow us on Twitter and look out for the creation of our Facebook page to learn more about us as we (hopefuly) grow!

We all have an interest in stress. There is strong anecdotal evidence (because there’s been, as far as I’m aware no real study in this area) that stress can cause, or increase, your vitiligo. I’ve experienced this myself, as my small original patch grew to my face, and beyond!, during a very stressful period of my life. So then we ironically experience the stress of trying to avoid stress. During the past few weeks, with family issues, looking for a job, thinking about setting this charity up, I’ve been looking for ways to manage my stress better, and here’s my top list! I hope that you find something helpful here, and please share your own suggestions too. If you are experiencing overwhelming feelings, please see the HELP link at the end, and get advice or support from a professional.

Meditate…

First up is a very useful set of free guided meditations from the University of California, Los Angeles

Meditate

I’ve also recently been introduced to this website, by one of our Twitter followers. It also has a free guided meditation, and a lovely ethos of “increasing kindness”. After slightly bruising experiences recently, this sounded like just what we all need!

Kindness

Breathe…

Secondly, I’ve found deep breathing can be a practically instantaneous way of calming your heart rate and, by focusing on your breath, helps to release your mind from the teeming anxious thoughts that may be overwhelming it.

There are many places you can find breathing techniques online, but this simple diagram, and timings for inhalations and exhalations, is a good place to start.

You’ll find recommendations online of longer intervals of holding your breath and inhaling and exhaling – please work up to these as it can make you light-headed to be over-ambitious, when you first start!

Choose…

Thirdly, you may, like me, need some help in making a difficult decision, or just with the endless decisions we are faced with, day in, day out.

Making decisions in our lives can be a major source of stress, to the point where we become anxious and paralysed with indecision.

TS Eliot talked about doing the “right thing for the wrong reasons”, but it’s probably also that we are worried about doing the “wrong thing for the right reasons”.

I remember though a friend telling me about Nancy Mitford’s advice to “never look back” I also found some of the ideas in this article useful:

Making a choice

Close up of a stopwatch

I really like the idea of limiting your time spent (agonizing?) on making a decision. It’s worth giving this a try. If you think a decision is too important to be made in a hurry, read about the important decision made quickly in this article.

The key is to clear your mind about the issues, and to avoid regret. Easier said than done, I know.

Resolutions…

I also like the idea of forming habits to do positive things in your life, rather than making open-ended resolutions that then make you feel guilty if you haven’t done them, but don’t help you get the action done.

I’ve been following a really great blog on fitness and general health habits and the writer covers habits here. Also throughout her blog.

It transformed both getting myself to the gym, and also being kinder to myself when the summer holidays hit and I wasn’t able to go as regularly.

There’s also this great post, which helped me make at least one of my major decisions recently, thank you, Bethany!

I also enjoyed reading about Timothy Wilson’s idea of rewriting your ‘story’, although his book gets mixed reviews on Amazon, the idea seemed really inspiring. I am not a particular fan of the school of positivism (mostly because if you have a chronic illness, or several, it can seem a bit trite), but the idea that you can recast stressful experiences in your life through a re-writing of them (both literally and figuratively) is a positive one.

I look back on my recent experiences in, and with, vitiligo, and am trying to recast them into one where I tried my very best with some odds stacked against me, rather than…the alternative! Too depressing to tell that story at the moment! Check out the interview with Timothy Wilson.

NOTE:

If you are really struggling with anxiety or depression, please see your doctor and find a safe route through. Please also use the resources provided by the NHS, on the link below. Never suffer in silence.

H E L P

I wish you all the very best in your vitiligo journey, be kind to yourself and others, and come back soon for our next newsletter.

@VitiligoUK