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.
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!
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.
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!
What’s new ?
Take care of your eyes!
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…
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
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:
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.
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
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
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
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
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?:
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!
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/
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.
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.
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.
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.
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.