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.
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 linkthat’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 theirAmazon 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.
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.
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
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.
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!
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/!