Friday Facts

We’ve been running our Friday Facts feature about different aspects of vitiligo on our Facebook group and this is the latest post about research.

Friday Facts:

What research should I trust?

Whilst vitiligo doesn’t yet have a cure, there are certainly a number of studies taking place every year looking at different aspects of our condition, and its treatment.

Research into vitiligo falls roughly into three areas: what causes vitiligo; what treatments slow or stop the vitiligo and what treatments stimulate re-pigmentation.

For example, this year the HI-Light trial will report on its findings on a particular treatment for vitiligo.  This UK study, that some of you may have taken part in, was looking at treatment with a hand-held UVB device, alongside use of a cream to enhance the effects of the UVB.  Part of the trial’s interest to vitiligo patients in the UK would be to see results that meant the NHS developed a programme whereby we could have these hand-held devices at home for treatment of small patches, say on the hands or face, meaning less time taken up with treatment away from work, school or university or home life.   

The trial was a randomised, controlled trial, and if you are looking at a piece of research and seeing if you should trust the results, perhaps to make a decision about your treatment or making a lifestyle change, this is what you should be looking for.

What does Randomised and Controlled mean?

  • Randomised or Random Allocation

This means that if you volunteered to take part in a study, you would be randomly assigned to a different group within the trial, and not be told what group you were in.  

It means a study in which a number of similar people (say all with stable, non-segmental vitiligo) are randomly assigned to two (or more) groups to test a specific drug, treatment or other intervention, without taking any similarities or differences between all the people volunteering into account.  This randomisation means that each individual has the same chance of having each intervention.

There might be three groups in the trial, which would comprise, for example, those receiving the active treatment, those receiving an inactive treatment or a placebo and a comparison treatment.  The researchers wouldn’t therefore choose to put all the people with vitiligo on their face into the active treatment group, because they believed that that group would respond better to the active treatment, but the volunteers would be assigned into a group that was chosen for them by, perhaps, a computer-generated random sequence.

The groups are followed up to see how effective the experimental intervention was. Follow up in vitiligo trials tends to look and see how long the re-pigmentation lasts.

The results are then measured at specific intervals (in the HI-Light trial this was at three, six and nine months.

This method is also used to reduce bias.  So, for example, vitiligo researchers might be pre-disposed to believe that facial vitiligo would respond better to treatment and look for that result being replicated in their trial.

  • Numbers

A study should have at least twenty people in it for the results to be trustworthy – otherwise the risk is that the treatment effects that you see are random chance. 

You will very often see people saying that they tried different things which they claim cured their vitiligo or caused them to re-pigment.  You are very welcome to try anything that gives you some feeling of hope or control over your vitiligo however one person’s claims does not make a reliable result.  

Reliability

This refers to the ability to get the same or similar result each time a study is repeated with a different population or group.  This is assessed by complex statistical calculations. 

  • Published Research

Research results are published in medical or scientific journals where they are peer-reviewed and subjected to comments and questions. If someone says they have a product that treats vitiligo effectively and they’ve never published their study, that raises questions about the effectiveness of the research, or that they are trying to keep the results from the public or other scientists because the results didn’t support their theory.  The process of designing and carrying out a randomised controlled trial is very rigorous in the UK and subject to many regulations, and ethical considerations. 

  • Longitudinal studies 

When looking at the effect of something like diet on your vitiligo, what’s called a longitudinal study is used. These are very difficult to maintain because you are asking people first to control strictly an aspect of their daily life, for example excluding or including something in their diet, secondly to be consistent about that over a long period and finally, to be completely honest about it!

  • Anecdotal evidence 

If one or two people say that they have cured or effectively treated their vitiligo with some (unusual or otherwise) treatment this is just someone’s account of what happened to them and may well not be true of a group of people who then follow the same treatment.  There is no proof that this treatment works beyond one person’s anecdote, and no control of other variables in their life.  For example, someone may say that they started taking a supplement in May one year, and saw pigment patches coming back on their face.  This may actually relate to them starting to walk to work again after the winter, and getting incidental sun exposure, rather than the supplement itself, but we have no control of those variables so cannot tell.

Because vitiligo can be so distressing, we all respond with interest to news about new trials, or to people’s claims.  It is better to wait for a properly conducted trial to be done before you make any changes to treatment, and to follow reputable clinical resources to ensure the information you use is the best possible.

One of the best sources of information is the Cochrane Review, which does all the work for you in analysis of information from trials and tells you what shows a positive effect. It can be found here:
https://www.cochrane.org/CD003263/SKIN_treatments-vitiligo

  • Should I take part in research trials?

Yes, please do!  The more of us willing to take part, if we are eligible, means the more likely that meaningful results will be found for us all.  

https://www.cochrane.org/CD003263/SKIN_treatments-vitiligo

2018 Bulletin : Treatment, supplements, MeetUps and more

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:

British Thyroid Foundation 

NHS Choices website: hypothyroidism

NHS Choices website: hyperthyroidism

 

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

Twitter

Instagram

Facebook

 

 

2017 Bulletin One

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


Genes

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:

ADDISON’S DISEASE

THYROID DISEASE

DIABETES

PERNICIOUS ANAEMIA

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

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:

 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:

Skin Matters

Living In the Beach

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Duis autem vel eum iriure dolor in hendrerit in vulputate velit esse molestie consequat, vel illum dolore eu feugiat nulla facilisis at vero eros et accumsan et iusto odio dignissim qui blandit praesent luptatum zzril delenit augue duis dolore te feugait nulla facilisi. Nam liber tempor cum soluta nobis eleifend option congue nihil imperdiet doming id quod mazim placerat facer possim assum. Typi non habent claritatem insitam; est usus legentis in iis qui facit eorum claritatem.

Investigationes demonstraverunt lectores legere me lius quod ii legunt saepius. Claritas est etiam processus dynamicus, qui sequitur mutationem consuetudium lectorum. Mirum est notare quam littera gothica, quam nunc putamus parum claram, anteposuerit litterarum formas humanitatis per seacula quarta decima et quinta decima.

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

The Autumn is here!

October Update

autumn leaf

 

What we’ve been doing!

newsletter sept clinuvel

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

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

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.

vitamin-D

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!

Fire For Cold Weather

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Duis autem vel eum iriure dolor in hendrerit in vulputate velit esse molestie consequat, vel illum dolore eu feugiat nulla facilisis at vero eros et accumsan et iusto odio dignissim qui blandit praesent luptatum zzril delenit augue duis dolore te feugait nulla facilisi. Nam liber tempor cum soluta nobis eleifend option congue nihil imperdiet doming id quod mazim placerat facer possim assum. Typi non habent claritatem insitam; est usus legentis in iis qui facit eorum claritatem.

Investigationes demonstraverunt lectores legere me lius quod ii legunt saepius. Claritas est etiam processus dynamicus, qui sequitur mutationem consuetudium lectorum. Mirum est notare quam littera gothica, quam nunc putamus parum claram, anteposuerit litterarum formas humanitatis per seacula quarta decima et quinta decima.

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

Build a Beautiful Website

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Duis autem vel eum iriure dolor in hendrerit in vulputate velit esse molestie consequat, vel illum dolore eu feugiat nulla facilisis at vero eros et accumsan et iusto odio dignissim qui blandit praesent luptatum zzril delenit augue duis dolore te feugait nulla facilisi. Nam liber tempor cum soluta nobis eleifend option congue nihil imperdiet doming id quod mazim placerat facer possim assum. Typi non habent claritatem insitam; est usus legentis in iis qui facit eorum claritatem.

Investigationes demonstraverunt lectores legere me lius quod ii legunt saepius. Claritas est etiam processus dynamicus, qui sequitur mutationem consuetudium lectorum. Mirum est notare quam littera gothica, quam nunc putamus parum claram, anteposuerit litterarum formas humanitatis per seacula quarta decima et quinta decima.

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

Hard Work For Success

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Duis autem vel eum iriure dolor in hendrerit in vulputate velit esse molestie consequat, vel illum dolore eu feugiat nulla facilisis at vero eros et accumsan et iusto odio dignissim qui blandit praesent luptatum zzril delenit augue duis dolore te feugait nulla facilisi. Nam liber tempor cum soluta nobis eleifend option congue nihil imperdiet doming id quod mazim placerat facer possim assum. Typi non habent claritatem insitam; est usus legentis in iis qui facit eorum claritatem.

Investigationes demonstraverunt lectores legere me lius quod ii legunt saepius. Claritas est etiam processus dynamicus, qui sequitur mutationem consuetudium lectorum. Mirum est notare quam littera gothica, quam nunc putamus parum claram, anteposuerit litterarum formas humanitatis per seacula quarta decima et quinta decima.

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