'Own your vitiligo, don't let your vitiligo own you"
The Autumn is here!
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!