Newsletter September 2016

What’s new newsletter sept cat?

Take care of your eyes!

newsletter sept eye

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…

1.newsletter sept clinuvel

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

http://vitiligocover.com/how-can-you-participate-in-the-scenesse-fda-trials/

 2.newsletter sept samaritans

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:

Changing Faces Self-Help Home Page

British Association of Dermatologists’ Psycho-dermatology resources

3.Newsletter sept BAD

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.

4.newsletter sept charity commission

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

newsletter sept 2016 doctor

 

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 

Key Questions

If you are not yet diagnosed, before your GP appointment, ask yourself:

  1. 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

  1. 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

  1. 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

  1. 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

newsletter sept tablets

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

newsletter sept hospital

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

Treatments7sunscreen

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?:

newsletter sept flower psych

 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!

And finally… 

IMG_1128

IMG_1129

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/