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!
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!
This newsletter covers:
Some important Vitiligo research news
Feeling good about yourself and
Camouflage or not – a tricky question
SOME IMPORTANT VITILIGO 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.
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.”