march 2011 final - university of nottingham · technology assessment), an independent funding body,...

VITILIGOS O C I E T Y

Promoting apositive approach

to living withvitiligo

DispatchesTHE MAGAZINE OF THE VITILIGO SOCIETY NUMBER 56 March 2011

CAMOUFLAGE SPECIAL

ALSO INSIDE

TOP TENUNCERTAINTIES

FOR THE TREATMENTOF VITILIGO

DERMATOLOGYSERVICES IN THERESTRUCTUREDHEALTH SERVICE

2 Dispatches No 56 | March 2011

In This Edition

The Vitiligo Society, 125 Kennington Road, London SE11 6SF Freephone 0800 018 2631 Office 020 7840 0844 Fax 020 7840 0866 www.vitiligosociety.org.uk email: [email protected] Registered Charity No 1069607: Company No 3542195

Items for publication in the next issue should be addressed to The Editor, Dispatches, TheVitiligo Society, 125 Kennington Road, London, SE11 6SF, (email : [email protected]) and should arrive by the end of May 2011.

Statements and opinions expressed in Dispatches, whether in editorial matter or inadvertisements, are not necessarily those of the Vitiligo Society. While the Societymay provide product information or allow companies to distribute samples, it doesnot endorse or recommend particular products.

The Editor reserves the right to shorten and/or edit items submitted for publication.

Top Ten Uncertainties

At long last we are able to print the thetop ten uncertainties for the treatment ofvitiligo which have been defined by aresearch project managed by the Centrefor Evidence Based Dermatology atNottingham. These have been aroundsince March 2010 but we were unable topublish until they had appeared in theBritish Journal of Dermatology. Theimportant thing now is that we mustsupport the efforts of NottinghamUniversity to go forward with a fullyfunded study on one or more of thesefactors.

Vitiligo - Denzil`s Story

Finally, with Spring in the air, Irecommend that you read the excellentfeature by Denzil Murphy whichdescribes his day-by-day efforts to carryon a healthy life in the open air despitethe limitations of vitiligo.

Jeff Lock

Trustees of the SocietyTony Bewley, Norma Bird, Hilary Fassnidge, Elana Kelly, Paul Johnson,Bernard Lamb, Jeff Lock, Mike Moore, Gurdeep Romanay, Emma Rush andChris Williams

StaffKalpana Pabari, Jennifer Viles

Editor for this issueJeff Lock

© The Vitiligo Society 2011ISSN 1367-5877

A Suggestion ForRaising Money Forthe Society

I`m proud to say thatsince I last wrote aneditorial I have notonly become one year

older but have also raised £200 for theSociety through the simple device ofasking my friends to donate a smallamount of money rather than giving mebirthday presents. Now that I havebecome really old, I find that I haveeverything I need and friends reallystruggle to find good presents.Consequently they are delighted when Isay - instead of giving a present, pleasedonate £5 per head to my favouritecharity. Why not try it with yourfriends the next time you have abirthday?

Please Renew Your subscriptions

This editions coincides with our annualrequest for the renewal of yoursubscriptions. This year it is especiallyimportant that the Society remains ingood financial health because we arefacing a major reorganisation of thehealth service and we strongly suspectthat dermatology services will comeunder severe pressure. Please ensurethat the Society is there to fight thedermatology corner in your name.There is a special feature on page 3.

CONTENTS

Page 3 - Dermatology in the Restructured Health Service

Pages 4&5 Ten Treatment Uncertainties

Pages 6 Camouflage Article

Page 7 -9 Denzil`s Story

Page 10 Camouflage in Hot Places

Page 11 Camouflage CopingStrategy

Page 12 Letters

Page 13 Your Views onDispatches

Page 14 Photographic Project

Page 15 Coping Strategies

Page 16 Walk For Skin andOnline Survey

Dispatches No 56 | March 2011 3

DERMATOLOGY IN THE RESTRUCTURED NATIONAL HEALTHSERVICE: PLEASE RENEW YOUR SUBSCRIPTIONS SO THAT WECAN CONTINUE TO FIGHT FOR YOUR SERVICES

What will dermatology services look like in the National Health Service after the completion of the government`srestructuring plans which will see patient budgets delegate to GP consortiums? The answer is that, no one really knows.But the health service is under pressure to make economies and it is more likely that “soft” areas such as dermatologywill be targeted. Dermatology services are already understaffed and unless we fight to make our voices heard thesituation can only get worse. The Vitiligo Society has been playing an active role in the Dermatology Council forEngland (there are separate councils for Wales and Scotland) and supports the following manifesto issued by thecouncil which has been submitted to the government as part of the white paper consultation process.

Key Manifesto Requirements in Skin Care

The Dermatology Council of England believes that the following minimum standards should apply to the provision of skin careservices in the UK. The Council therefore calls upon the Government to commit to providing these standards.

1. Equitable access to the full range of dermatology services throughout the UK through the development of agreed goldstandards for all dermatology services, no matter where a person lives. When health-care targets exist, they should notdisadvantage any group of patients.

2. All dermatology services should provide holistic support, treatment and care. In order to achieve gold standard status, allservices must offer access to psycho-social support, including specialist nurses, camouflage services and where appropriate,counselling and psychotherapy.

3. Minimum requirements for dermatology patients should include:

§ ready access to a healthcare practitioner who is adequately trained and experienced enough to diagnose and managetheir condition, and has demonstrated that their training is up to date. This should apply to the assessment of both skincancer and inflammatory skin disease.

§ prompt and easy access to specialist care, when required

§ continued follow up care, if required, by the same team

§ free prescriptions if their skin condition is chronic

§ access to a comprehensive skin surgery service and a full range of medication as prescribed

4. Provision of high quality dermatological surgery for the surgical management of skin cancer, including high quality Mohsmicrographic surgery when required.

5. As with cancer services, 'supportive care' must become integral to dermatology.

6. Medical undergraduate training and GP training should be sufficient at least to ensure that all doctors have a basic knowledgein dermatology for common and important diagnoses.

7. Basic nurse and pharmacist training should also include dermatology and those specialising in dermatology should have easyaccess to post-qualification training if they desire it.

8. Patients should be properly consulted in the design of their local dermatology services, particularly if there are to be majorchanges to the way that skin care services are to be delivered. It should not be possible for a service provider to withdraw fromtheir role without consultation with patient representatives.

NEWS


As you may remember from previousissues of Dispatches, the vitiligo projectis part of an independent researchprogramme commissioned by theNational Institute for Health Research(NIHR) looking at setting priorities andreducing uncertainties for the preventionand treatment of skin disease. Thisproject is being coordinated at the centreof Evidence Based Dermatology,University of Nottingham.

The aim of the vitiligo project was toidentify the Top 10 treatmentuncertainties from the various potentialand currently available treatments for

vitiligo and to submit a grant applicationfor a large-scale randomised controlledtrial of one of the treatments. There wereseveral stages: initially, a survey wasconducted to collect uncertainties aboutthe treatment of vitiligo from patientsand healthcare professionals. Thisidentified 93 unique treatmentuncertainties.

Next, a ranking exercise was conducted,which allowed people to vote for theirfavourite topics. This process identifiedthe Top 23 treatment uncertaintiesimportant to both patients and healthcareprofessionals. Finally, the Final

TOP TEN UNCERTAINTIES FOR THE TREATMENT OF VITILIGOBy Dr Viktoria Eleftheriadou and Maxine Whitton

Prioritisation Workshop resulted in a listof Top 10 research priorities for thetreatment of vitiligo. This workshop wasa full day event at the BritishAssociations of Dermatologists House inLondon, on the 25th of March 2010.

The Final Prioritisation Workshop was agreat success. Forty people attended:almost half of them were patients andhalf healthcare professionals, includingdermatologists, specialist nurses, generalpractitioners, researchers andcamouflage professionals.

We are delighted to reveal the Top 10 vitiligo treatment uncertainties:

1. How effective are systemic immunosuppressants in treating vitiligo?

2. How much do psychological interventions help people with vitiligo?

3. Which treatment is more effective for vitiligo: light therapy or calcineurin inhibitors

(e.g. tacrolimus, pimecrolimus)?

4. How effective is UVB light therapy when combined with creams or ointments in

treating vitiligo?

5. What role might gene therapy play in the treatment of vitiligo?

6. How effective are hormones or hormone related substances that stimulate pigment

cells (MSH analogues, afamelanotide) in treating vitiligo?

7. Which treatment is more effective for vitiligo: calcineurin inhibitors or steroid

creams/ointments?

8. Which treatment is more effective for vitiligo: steroid creams/ointments or light therapy?

9. How effective is the addition of psychological interventions to patients using cosmetic

camouflage for improving their quality of life?

10. How effective is pseudocatalase cream (combined with brief exposure to UVB light) in

treating vitiligo?

In addition, two treatment uncertainties were suggested as “ones to watch”, as these interventionswere still in an early investigative stage.

11. How effective is piperine (black pepper) cream in treating vitiligo?

12. What role might stem cell therapy play in treating vitiligo?

RESEARCH


RESEARCH

The results of the vitiligo project arebeing widely disseminated to both theclinical and research community. DrViktoria Eleftheriadou has givenpresentations on the Top 10 treatmentuncertainties in September at the 16th

Meeting of the EuropeanSociety of Pigment CellResearch, Cambridge, UKand at the First VitiligoWorld Congress, Milan,Italy. Maxine Whitton alsospoke about the project at thePatient Day meeting at theVitiligo World Congress.

Five research vignettes basedon the Top 10 uncertaintieshave been submitted to theHTA NIHR (HealthTechnology Assessment), anindependent funding body,

and are currently being considered forfunding of a trial on treatment forvitiligo.

If you are interested in finding out moredetails about the vitiligo project, the

Final Prioritisation Workshop, BAD House,

We are really pleased to inform you that our team is working on the following research ideas.

· Effectiveness and safety of hand held NB-UVB devices at home for the treatment of limited or early

vitiligo

· The effectiveness of topical corticosteroids compared to topical calcineurin inhibitors

Of course, it will take time for us to complete all the preliminary work needed to complete a trial protocol andwe are not currently recruiting patients. However if you are interested in taking part please keep an eye on ourwebsite www.vitiligostudy.org.uk as well as the Dispatches. We will keep you updated!

Finally, we would like to say a big thank you to all the people who contributed to thevitiligo project. We have received great support from the Vitiligo Society throughout theentire project and the contribution of patients has been crucial to its success.

We really appreciate your time and willingness to be part of this unique and importantopportunity to have your say in research into vitiligo.Please don’t hesitate to contact us (Dr Viktoria Eleftheriadou) if you have anyenquires or suggestions on the: [email protected]

The views expressed in this article are those of the authors and not necessarily those of the NHS, NIHR orthe Department of Health.

article is published in the British Journalof Dermatology (Eleftheriadou, V. et al.“Future research into the treatment ofvitiligo: where should our priorities lie?Results of the vitiligo priority settingpartnership”. British Journal ofDermatology 2011, no. doi: 10.1111/j.1365- 2133.2010.10160.x), which iswidely available online to all internetusers (free of charge).

Our next step is to work towards thedevelopment of a trial protocol based onthe identified Top 10 uncertainties. Inmaking our decision we had to take intoaccount several factors includingfeasibility, willingness of clinicians torecruit patients and convenience forpatients. Also, we had to take intoconsideration, previous trials and theirresults on the chosen topics.

Dr ViktoriaEleftheriadou

TOP TEN UNCERTAINTIES continued


CAMOUFLAGE SPECIAL

It seems to be true that most people withvitiligo can cope better when the face isnot affected. The face, quite apart frombeing an important element in ouridentity, also plays a vital role in theway we communicate with the rest ofthe world. Our ideas of beauty aremainly centred on the face. Adisfigurement or blemish, even a smallspot on the face can be seen as adisaster. It can leave the person with avisible difference exposed to teasing,bullying, staring and rude comments,often from complete strangers. Fear ofcontagion can also lead to recoil fromtouch. It is therefore not surprising that

people with vitiligo want to hide theproblem.There is no cure for vitiligo and thetreatments available have limitedsuccess with no guarantee that thecondition will not recur, so many peopleresort to covering up the affected areas,particularly hands, neck and face, eitherwith clothing or cosmetic camouflage.In addition, many GPs routinelyprescribe cosmetic camouflage which isthe only preparation licensed for vitiligounder the ACBS scheme. The widerange of camouflage products availablecoupled with skilful instruction in howto apply them can make a hugedifference. Remarkable results can beachieved when a good match is madewith the normal skin tone to the delightof the person with vitiligo.

However, the use of these products isnot without problems. Concealing thewhite patches is not the best way tocome to terms with vitiligo. It is all tooeasy to hide behind the make-up andpretend that nothing is wrong. This canlead to increased anxiety born of the fearof it rubbing off and people seeing theaffected area as it really is.

Another factor to take into account isthat vitiligo is unpredictable andgenerally spreads. While it is possible tocover the affected, exposed areas, thesemay get bigger or more of them couldappear. Sufferers therefore have to

spend more and more time disguisingthe white patches, leading to furtheranxiety. It is also worth bearing in mindthat with active disease there are likelyto be other affected areas which cannotbe covered. On the positive side theproducts are usually water-proof andmay allow swimming if patches are nottoo extensive. The creams can also beused in conjunction with some otherprescribed creams and ointments,usually corticosteroids or calcineurininhibitors which can improve thecondition in some cases.

Cosmetic camouflage is most usefulwhen it is part of an informed choiceand after acceptance of the disease. Ifthe person with vitligo is covering uptheir patches at all times, in some cases(reported anecdotally) even before goingto bed, then they are too dependent on it.If on the other hand they choose when touse it and feel comfortable without it infamiliar surroundings and with friendsand family, the likelihood is that theyare coping better with their disease.There is no doubt that many people withvitiligo have found that cosmeticcamouflage makes a big difference totheir self-confidence and it remains animportant part of dealing with thisenigmatic disease.

(Maxine Whitton, BA Hons, Hon MsC,Patron of the Vitiligo Society)

IS CAMOUFLAGE THE BEST WAY TO COME TO TERMS WITHVITILIGO? By Maxine Whitton

WHAT DO YOU THINK ?

We would love to hear your views on the use of camouflage.

Please write to us or email the editor at :

[email protected]


Out of bed and curtains back. Oh dear,what a pity, the sun’s out. Not the sortof reaction I would have had 10 yearsago prior to a hot and sunny holiday toGoa.

My story started there and a journey ofdisbelief, realisation, helplessness,anger, and self pity, ensued. So whatsort of a person was I and what sort ofperson am I now? Well, I’m 55, ofAnglo Indian parentage, I hold down aprofessional position involving aconsiderable amount of customerfacetime, and I consider myself veryfortunate to have inherited a duskycoloured skin tone.

In my first 45 years I enjoyed, for themost part, all the good things in lifealthough my parents were not wealthy.I achieved a good education, travelledaround the world with my profession,possessed reasonable good looks andan outgoing gregarious and friendlypersonality. My wife even remarkedonce that I could throw a party in anempty room. Amongst all this was mylove of the sunshine. In less than anhour my skin colour would darken, in ahealthy way, and I never burned.

That all changed in 2000. Prior todeparting these shores for hot and sunnyclimes I would go for one single sunbedsession just to prepare my system for thedifference between the cold of the UKand the heat of the destination. Thewisdom of this ritual has since beenseriously questioned. After the session Iwent home to complete packing for thenext day’s departure.

I must point out at this juncture that myphysical condition was at a low ebb. Iwas under a lot of stress as a managerfor my company and thoroughlyexhausted. This holiday couldn’t comesoon enough. I also had a toothinfection that, despite root canal work,would not recover and I was taking thehard-hitting Metronidazole, and the notso strong Amoxicillin, in an effort tocure it. Finally, and it sounds trivial, Icut my lip shaving on the day of ourdeparture. Trivial it may have been butit didn’t stop bleeding until we reachedIndia and this too added to my rundown, depressed condition.

Whether or not all, or some, of theabove conditions caused the onset of myvitiligo will always remain a mysterybut I have read that some cases notattributable to heredity, including myown, have been due to receiving asevere shock. I remember reading abouta lady who fell during rock climbingwhose Vitiligo began the next day andothers who have succumbed due tostress. Mine was still to present itself.

The strength of the sun in any part of theworld had never had an adverse affecton me. With that in mind I donned apair of beach shorts and slumpedgratefully under the hot Goan sun. Mygirlfriend and I had literally beensunbathing for a little over ten minuteswhen she exclaimed that something hadhappened to my face. I shrugged it offbut she insisted something was amiss.The mirror in the chalet reflected backto me, what I now know to be vitiligo.Both cheeks had a blotchy, mottled

effect as did a large part of myforehead. Horrified by this vision I,initially, went back out into the sun. Iirrationally figured that, for reasonsunknown, I had lost areas of colourfrom my face and that the best courseof action would be to let the sun fill thepatches back in. Maybe it would all goaway. The condition worsened thatday, and the next, and the affectedareas, far from re-pigmenting, wentpink and sore.

I have read and self studied practicallyeverything to do with vitiligo but myunanswered question that I must throwin here is this. When I was physically,and to a degree mentally, at my lowestpoint surely my immune system wouldhave been too and if it was equally asdiminished as the rest of me, and is thevillain of the piece, how exactly did itachieve the power to rob me of mypigmentation. I’m sure someone willknow the answer.

On my return to the UK, and at greatexpense, I made appointments to seetwo separate skin disorder specialists.They both turned out to be of absolutelyno help whatsoever and neither of themdiagnosed vitiligo. In fact after a bit ofprodding and scrutinising theywondered at the lack of hair follicles inthe affected areas, took Polaroidphotographs, gave me the bill and sentme on my way. One of them didventure, however, to say that he thoughtit may have been caused by ‘phototoxic shock’. This was the point atwhich I realised I was pretty much onmy own and thus began my journey ofdiscovery and self help.

At first the patches on my face were theonly areas affected and I learnedthrough plaintive phone calls that theRed Cross offer a camouflage service tothose with skin tone or birthmarkproblems. I tried all their products(Dermablend etc.) with the creams,spray fixers and powders but theprocess was long and messy. The

VITILIGO: MY STORY by Denzil Murphy(Including Denzil`s Use of Camouflage)

CAMOUFLAGE SPECIAL


finished result looked earthy and thematch wasn’t particularly close but forthe time being I persevered as that wasall I had. I would like to take thisopportunity to thank those Red Crossstaff that tried to help me in the earlydays.

Over the last ten years I have triedalmost every cosmetic product on themarket to disguise the white areas andtheir relentless advance. After about ayear little white dots of pigment lossstarted to appear on my hands (rightmore so than the left) initially at, andaround, the areas of old scars. Over thenext few years these areas expanded andthen started to merge together. As oftoday most of my fingers have lost theirpigmentation along with a gradual creepalong the backs of my hands. (Seephoto.)

Other areas too started to show signs ofthe problem: not all of them are visibleto others. It is said that vitiligo affectsall the extremities. Take it from me, it’strue. After roughly three years my feetbegan showing signs of loss with twosmall, symmetrically positioned, patchesappearing at each ankle. Elbows werenext and additionally to date there arepatches and many dots on the undersidesof my wrists and forearms. My toes arenow going the same way as my fingers.In the meantime the facial, neck andhand areas have continued steadily toworsen.

I once put the roof down on the car andtried an experiment to see if exposingmy mainly depigmented hands to thesun during a days driving wouldsomehow initiate regeneration. It didn’t.In fact it seemed to accelerate theproblem. I think I know what you’regoing to say now. Why have a soft topif I have vitiligo? I still love to drivewith the top down and you can’tabandon all pleasures. But it was backon with the driving gloves and thebaseball cap.

That about covers the areas affected andI can report that all patches haveincreased in surface area steadily andrelentlessly.

Five years ago I tried a six-month courseof UVB treatment. In fairness there wasa small degree of re-pigmentation to thesides of the face, under the eyes and onthe ridge of the nose, but it was reallytoo little to be of consequence. Theoverall effect was to slowly cook me tothe point where for a good dayafterwards I was red and sore. I havetried many, and all, suggested cures suchas topical creams, excesses of folic acid,some strange cream from Cuba etc, etc.I am now convinced that, since no curecurrently exists, all I can do is todisguise the visible areas as best I can.

Today, after a massive amount ofexperimentation, I use moisturisers onmy face followed by Smashbox PhotoFinish Bronzing as a primer withadditional Laura Mercier Pure HoneyMineral powder under my eyes. Then Iblend it all in. On my hands I moisturisefollowed by St Tropez Step 3 TintedSelf-Tanning Lotion and / or Cliniqueskin supplies for men Non-StreakBronzer.

Don’t get me started on just howdifficult and embarrassing it is, as aman, to source andtest these products.Sitting at a cosmeticsbooth with anaudience is aseriously witheringexperience. AnywayI blend and vary thequantity of any ofthe above cosmeticsdepending upon theseason and the endresults do differ, indepth of colour,considerablybetween summer andwinter. In thesummer sun all the

exposed naturally brown bits still turnevery shade of dark whilst leaving thewhite bits very white. This is the worsttime of the year for me and I’m suremany others.

I long for the ambiently warm / hotovercast days when I don’t have to weara hat or any sort of sun protection.Although it is now my least favouritetype of holiday we still tend to bookgetaways to the sun. My wife loves tosunbathe and I am now forced to enjoythe ambient air temperature only since Inow have to spend all my time in theshade.

In the winter months the darker areas ofmy skin fade to a much less noticeableshade and the amount of ‘colour’ I needto apply is far less or none at all. It isduring these months that I am at mymost adventurous. I do go to the shops,answer the door, talk to neighbours andsometimes forget that I haven’t appliedany cosmetics. The converse is true ofthe summer. Once that contrast betweenthe light and dark patches become moreobvious I deliberately avoid doing anyof those, and other, things.

In the course of everyday living I havediscovered that what to wear, where toput personal items about ones person,and how easy it is to retrieve these

CAMOUFLAGE SPECIAL

VITILIGO: MY STORY by Denzil Murphy (continued)


no mistake, it’s all an act. Funnilyenough I am more worried aboutfriends seeing me without mycosmetic ‘colour’ applied than I amabout family and strangers.

After reading through this I sound tomyself as if I am full of vanity, as wellas self pity, and that I should hoistmyself up by my bootstraps and justget on with it. Well that’s probablyright but, almost imperceptively, I dobelieve I’m getting there. I’ll writeand let you know in another 50 yearsor so.

I have the utmost respect andadmiration for those vitiligo suffererswho have the condition so much morenoticeably than me. How brave andresolute they are to persevere andcontinue as normal. Those peoplewho have already managed to take itin their stride, and made all thenecessary mental adjustments, are myheroes. I hope that one day I can getmy head around my lack ofacceptance and then maybe I will beas ‘in control’ as they are.

Until then, the suns still out. Oh well,on with the hat, suncream andgloves…………….Let’s go.

Denzil

items, needs careful prior planning. Thereason for this? If you wear lightcoloured clothing and you have personalitems in various pockets it is necessaryto dig deep to retrieve said items. Endresult is cosmetic darkening aroundpocket openings, shirt pockets and thelike. I find that asking my longsuffering wife to put all these things inher handbag solves the problem. Exceptfor the credit cards of course.

Equally I am careful about the shirts thatI wear, particularly in warm climates.An open necked shirt is usually out,unless it is collarless or of a darkmaterial, because the cosmetics I willhave applied around my affected neckarea deposit themselves, verynoticeably, around the collar. If anevent calls for smart casual and opencollar I will invariably wear a tie inorder to prevent this transference ofcolour to my collar. It looks a bitoverdressed but I don’t think anyone’stwigged yet.

Swimming and scuba diving are twoareas that have affected my behaviourgreatly. I love to scuba when theopportunity presents itself but I findmyself experiencing a massive attack ofanxiety and hand wringing prior to theevent. Why? Because when I firstdisappear below the waves I do so, forall intents and purposes, as a ‘normal’person. However, being submergedremoves any cosmetics I would havehad applied and the cold of the wateraccentuates the colour differences of myskin patches. As soon as I bob to thesurface and remove the equipment Iappear as quite a different person to theone that went out earlier. The colder thewater the more noticeable the contrast.I have witnessed looks of absolute shockand horror on the faces of those aroundme. For me that is emotionallyupsetting and crippling, and it neverseems to get any easier to accept.Because the love of Scuba outweighs thedistressing stares received I convincemyself that I will probably never bump

into the dozen or so peopleI have just spent the daywith on the boat.

Swimming is a differentmatter altogether. At thepool you are something of acaptive audience and if it’sa resort pool you willprobably frequently see thesame people for a week ortwo. Swimming has thesame affect on myappearance as it did forScuba but in addition Ihave found that the chlorineadversely affects the colour of somecosmetic applications. For example, theareas upon which I principally use StTropez, my hands, turn a bright orange andit doesn’t just wash off. That tinge staysfor days. For that reason I never swim butwill only wade chest deep to cool off.

The area of waterproof ‘colour’ has provedsomething of a disappointment. I havetried a few products to be applied whenswimming / diving but there are two mainproblems. The colours do not seem toremain constant and they really don’tappear to be as waterproof as they claim.The search continues.

In the scheme of things I know, deepdown, that my condition is not really sobad but still I remain extremely selfconscious. I am more than happy toremain indoors and unseen. Throughout,my wife has been a pillar of strength andreassurance to me but despite all this helpI’m still having difficulty coming to termswith vitiligo. That said, I do appear to begetting a little bolder but it is taking aninordinate length of time.

How do I feel now? Well, I’m stillcripplingly conscious of my appearanceand my self confidence remainssomewhere in the weeds. As an act ofpreservation, I manage to shield myself, toa degree, behind a facade. Apparently, toothers, I still appear as gregarious andoutwardly confident as I ever did but make

CAMOUFLAGE SPECIAL

VITILIGO: MY STORY by Denzil Murphy (continued)

Denzil With his wife Linda


CAMOUFLAGE SPECIAL

I found I hadvitiligo when Iwas in my late30s. I was islandhopping inGreece, spendingmost of my timein the sunacquiring a tan. (Iwas always a verypale person andgaining a tan inthe summerbecame veryimportant to myself confidence.)One day a woman

approached me on the ship and pointed outthat I had white patches on my upper backand shoulders and said I should see adoctor when I got home.

I arranged an appointment with adermatologist. He advised me that I haddeveloped vitiligo and that it was notdangerous but that it might spread, andthat I should protect my skin. No treatmentwas offered, nor have I attempted to getany since despite knowing a lot about whatis available through the Vitiligo Society:they seem very time consuming.

My vitiligo developed over the years.Initially I had the classic symptoms ofwhite patches which remained white whenthe rest of me tanned. I found the back ofmy hands the worst place to get burnt andhad some very serious burns before I gotmore aware that I had to take precautionsand keep them covered or smother them inthick sun protective cream, which was anuisance because everything I touchedbecame greasy.

I am now in my 60s and have very littleskin that is not affected by vitiligo. Overthe years I have realized that holidays inthe sun, spending most of the time tryingto get a tan, and laying on the beach werea no-no. So I looked for holidays thatwere more cultural, more interesting andkept me out of the sun. I prevented myself

from burning by covering myself uprather than using loads of creams.

Over the past few years I have visitedthe USA, South India, Jordan, SouthAfrica, Cuba and last year Viet Namand Cambodia. Explaining to myfellow holiday makers that I cannotstrip off or lay in the sun issometimes difficult. I do not want tostand out as being different, but at thesame time, I want people to realize Ihave a real medical problem. Iusually joke about having somethingin common with Michael Jackson andwill explain more about vitiligo ifanyone is interested. I always sit inshady places. A quick dip in the seais OK as long as I cover upimmediately afterwards.

What creams and lotions do I use?Well, I have tried various “fake tans”with varying results. I do need togive myself some colour as I am areal pasty-white without anything. Ifind the products that are more ofskin cream and that gradually giveme a pale tan the most satisfying andeasiest to use. (Johnsons, Dove,Garnier, Boots) They need to be usedcontinually and sometimes clothinggets stained by it, but it washes outand it’s a small price to pay.Throughout the year I use a day skincream with an SPF 15 on my face,and also Boots No.7 Dual Protectiontinted moisturiser over it which alsohas SPF 15. This is the only makeup I use on my face skin and it isexcellent.

Last Summer I discovered “BootsSoltan Once 50+ SPF protection forup to 6 hours” which I use on mybody, and Boots Soltan Once Face +gradual tan with SPF 15 protectionfor up to 6 hours, on my face - this isone of the few products that offerskin protection and gradual tan. I donot believe expensive brands offeranything better than more basicmakes such as Boots, Dove, Garner

and Johnson. It is always better to applysun protection creams when you aredressing, rather than wait until youarrive in the sun and try and apply itthen, you will find you will miss areassuch as back of neck and shoulders.You can always reapply some more onthe beach as time goes on.

Different types of environments affectskin burning. For instance in the UK, itcan be quite bright and sunny but with acold wind, but this can be the worstconditions in which to get burnt. But Ialso find that very humid conditionswhen I am “dripping” hot often means Ido not burn so much. Hot sunny dryplaces are amongst the worst. When Iwas in Cuba two years ago our tourincluded a coastal stay on beach youcould die for (white, white sand, shallowclear hot water). It was years since I hadbeen on the beach and made the most ofit, however, I did inflict some burningon my legs, but it was at the end of mytrip and quite frankly, the pleasureoutshone the pain!

One further point - there has beencoverage in the media over the past fewyears about the importance of Vitamin Dand that people who cover themselvesup (for whatever reason) may have atendency to have a reduced Vitamin Dlevel. People with vitiligo who do notspend much time in the sun, wear skinprotection creams and cover themselveswith clothing are at risk. I had myVitamin D level checked by my doctorand it turns out that I am only just on therecommended level. So my doctorsupplied information about diet. Youshould eat plenty of oily fish (such assardines, pilchards, herring, trout, tuna,salmon and mackerel), liver, egg yolk,mushrooms, cheese, milk and butter(small amounts), and fortified foods. Ihope this summer to try and get a littlemore sun early in the morning withoutskin protection to improve my VitaminD levels.

CAMOUFLAGE IN HOT PLACES by Mary Hill


CAMOUFLAGE SPECIAL

A COPING STRATEGY FOR USING CAMOUFLAGE

Come in, do take a seat. What do you know about skin camouflage?The response to this usual greeting is “not very much” or “Ah, yes, isn’t it a remedial, thick cosmetic?”Unfortunately, and all too frequently, the reply can be “I don’t want to wear it but my family thinks Ishould” or “my doctor said it’s a special make-up for women” - which is all rather worrying! Skincamouflage should be made available to men, women and children, irrespective of age, religion,nationality and skin classification group. It is something that should be discussed as part of yourdermatology care plan. Then, armed with the correct information, you can make up your own mind asto whether or not to explore wearing skin camouflage. Skin camouflage does not suit everyone; and itdoes not matter if you only use it for special occasions or as a coping strategy during your initialadjustment to having developed vitiligo. Neither does it matter if it becomes a long-term lifeline – thefrequency of wearing skin camouflage is your personal choice. Initially you may prefer to use a verylight application and then gradually build up to full density, or to enjoy the immediate effect full skincamouflage can bring. Even when the camouflage is not an accurate skin colour match, it can stoppeople staring or making comments and asking questions.

Using the term ‘skin camouflage’ creates no psychological barriers – it is non-exclusive – whereas“cosmetics” and “make-up” can create all kinds of anxiety to males, children and females who wouldnot normally wear make-up. Skin camouflage cannot alter the texture of the skin, nor can it beconsidered a remedy (remedial camouflage suggests it’s a cure), all it can do is to make your vitiligoless noticeable.

So how do skin camouflage products differ from other cosmetics?Skin camouflage crèmes are best described as being hyperpigmented ointments, which are set withloose powder. Although concealers and make-up foundations can be very effective in masking thehypopigmentation associated with vitiligo, they do not have the necessary properties of skincamouflage. When correctly applied skin camouflage is waterproof, which means you can goswimming, take a shower or have a bath and be out in the rain without the fear of it washing off.The products have sun-screening properties but no skin camouflage should be considered a fullsunblock and certainly not as such for the whole day. Non-greasy sun protection can be appliedunderneath and reapplied over your camouflage throughout the day and for those who like to wearmake-up, that too can be worn over the set skin camouflage!

(more .....)

The Vitiligo Society has recently launched a series of Coping Strategies : one of which relatesto camouflage. (For a full list see Page 14.) The strategies comprise the first in a series of self-help articles which will eventually cover all aspects of living with vitiligo. Please let us knowwhether you think they are useful.

To read the complete version of this coping strategy and see the other strategiesplease visit our website at www.vitiligosociety.org.uk. If you do not have accessto the Internet, please send a large stamped addressed envelope to the Vitiligo

Society at 125 Kennington road, London SE11 6SF


LETTERS

LETTERS

Dear Jeff,

I have just caught up with the November issue of Dispatches, and I found the"what triggered my Vitiligo" letters to be fascinating.

My vitiligo has progressed in stages. I first got it around my groin as a baby- Ihave been told it was left over after nappy rash. It remained quite stable until Iwas a teenager when I got some new patches: in particular where clothes &underwear rub (waist band, tummy, sides of back). They would appear quickly,

but then remain pretty unchanged.

My vitiligo was pretty stable again fora few years, until my early 20's whenI got some new, more visible, patcheson my neck, and shoulders. My sisterhad died, and I've never been sure if itis related or not. I was obviously verystressed and upset. But whatever thetrigger, most of my 'new' patches (i.e.since being a baby) seem to turn upwhere clothes rub. I'd be interested ifothers have experienced this too. Forexample, my neck patch popped upafter a holiday where I'd worn a halterneck swimsuit. And the shoulderpatches are where my bra straps sit.Anyway, not sure if that is of interest.But it's good to share. Keep up thegood work!

Kate Land

Dear Editor

Following up on your 'What causedyour Vitilgo' letters. I started withpatches on my elbows, knees andhands when I was about 10 or so. Theassumption on my part reading previous reports was that it wastriggered by puberty

As a child I was very shy and nervousand I wonder if that may have been acontributing factor. Forty more yearson and I am completely white apartfrom patches on my face mainly thecheeks. For several years now I havebeen hoping that they woulddisappear but my skin just seems tohave stabilised which I find mostfrustrating.

Interestingly when at school I neverhad 'micky' taking or any questionsand it is only in recent years now Iam virtually completely white that Iget the questions and 'mick' taking.

Regards

Martin Nicholls

Dear Jennifer

We met briefly at the Vitiligo World Congress in Milan in September and I promised to get in touch on our return to the UK.

Like many others, I have always struggled with my vitiligo and found I had to dig deep to find the confidence and strength toface the workplace, a busy hospital where I am in close contact with members of the public as well as hospital staff/workcolleagues. However due to the nature of my work, supporting often terminally ill children and their families, this has reallyhelped me get my life in perspective and together with huge support from my husband and sons I find that as I get older (I'm49 now and had vitiligo since expecting my first son 27 years ago) I am beginning to accept the vitiligo; I do feel morecomfortable once my skin colour loss is even; I think I will find it much easier to accept being pale all over than struggle withthe contrasting tan/white patches! And there is always St Tropez spray tan which is amazing! My husband Tim and I verymuch enjoyed the congress and it was especially lovely to meet Lee Thomas...what a special person..we havea smashing photo! We also met a lovely couple who had also attended the conference and who were staying at the same hotel;this is the first time that I had met and spoken to anyone else with vitiligo; we are now very good friends and I no longer feelanywhere near as isolated which for me has been one of the worst aspects of having vitiligo over the years. Anyway, apologiesJennifer, I hadn't intended to write an essay! In Milan you did mention something about the possibility of a vitiligo event inBristol in the future; I would be happy to add my support to this in any way which would be helpful.

Yours sincerely Cheryl Hawes


Dispatches provides me with adequate information StronglyAgree

Agree Disagree StronglyDisagree

1) recent developments in vitiligo research. 52% 45% 4%

2) activities undertaken by the Vitiligo Society 52% 48%

3) participative events which are open to societymembers.

50% 50%

4) the personal experiences of others who suffer fromvitiligo.

59% 37% 4%

5) medication and treatments available to vitiligosufferers.

41% 47% 12%

I consider that Dispatches fulfils its purpose in providingnews and information for members of the Vitiligo Society

48% 52%

I think that the frequency of publication (three times a year)is appropriate

42% 54% 4%

DispatchesYour views

Thank you to everybody who returned the questionnaire indicating your views on Dispatches. Here are the results of thesurvey.

Research PersonalAccounts

Fundraising Medication &Treatments

SocietyEvents

ParticipativeEvents

47% 32% 17% 76% 20% 17%

Preferences for more features (Figures show the % of respondents who voted for each topic.)

READERS’ SURVEY

Recent editions of Dispatches have been supported by a generous donation fromVCTC - the specialist awarding organisation for vocational qualifications

We will do our very best to take account of your views expressed in this survey.


Dear Vitiligo Society members,

I am placing this open letter inDispatches to appeal for your help in aphotographic project which I amcurrently undertaking.

I am in my final year of a photo-journalism degree at the University ofthe Arts London and am taking thisopportunity to produce a body of workon vitiligo that, along with beingsubmitted as part of my portfolio, willform part of a public exhibition in thesummer.

Vitiligo is a subject close to my heart,having been diagnosed with thecondition several years ago. I want toproduce a range of photographic workencompassing the physical appearanceof vitiligo, as well as possibletreatments and how it affects the livesof those who live from it. When I wasdiagnosed with vitiligo I was given anumber of documents on the conditionby my GP. The word ‘ugly’ was usedrepeatedly and, although upsetting atthe time, looking back I am shockedand angry that that point of view isstill widely accepted.

I have decided to make vitiligo thefocus of my major project as I hope I

can, in some small way, contribute tothat view being changed. I hope thatpeople who see these photographscan see vitiligo in a new, positivelight- can be happy to stare at myphotographs for as long as they needand not feel they must look awayimmediately, embarrassed, as if theyhad been caught gawping.

As well as being accessible, I want tomy photographs to be aestheticallypleasing. Yes, vitiligo looks unusual,but it is interesting. As I am sure youknow, the marks or patches are oftensymmetrical on the body; they are instrange shapes and are unique to eachperson. Features like these are whatmake us individual and distinctive,and I want to use this photographicproject to celebrate this.

And so I am looking for people towork with me over the next fewmonths. Your contribution can rangefrom a single portrait session tomeeting up several times andphotographing your day-to-day life.There is absolutely no level ofcompulsion in this project; we candiscuss your involvement before webegin and you can opt out at anypoint. I will ask for your approvalbefore using any photograph taken of

you, and you will be provided with aninformation sheet and model release form.The project will be transparent andoverseen by both the UAL EthicsCommittee and the Vitiligo Society.

I hope that anyone who participates in thisproject would be proud to be involved, andpleased with results. I am looking to workwith people of any sex, age or race. Aslong as you can have a positive approachto this concept, and are willing to bephotographed, I would welcome yourcontribution.

If you are at all interested in taking part,please do not hesitate to send me an emailand I will send you a further informationdocument that goes into the project inmore detail. My email address is includedbelow. If you would prefer, you cancontact the Vitiligo society directly, whocan pass your details to me.

Thank you so much for taking the time toread this, and I look forward to hearingfrom you,

Jessica Levy

[email protected]

PLEASE HELP JESSICA WITH HER PHOTOGRAPHIC PROJECT

Photo Taken ByJessica

Jessica

PARTICIPATIVE EVENT FOR MEMBERS


THE VITILIGO SOCIETY PUBLISHES COPING STRATEGIES

The Society has published the following coping strategies for vitiligo sufferers. To read the complete version of this copingstrategy and see the other strategies please visit our website at www.vitiligosociety.org.uk. If you do not have access to theInternet, please send a large stamped addressed envelope to The Vitiligo Society at 125 Kennington Road, London SE11 6SF.

COPING STRATEGIES


PARTICIPATIVE EVENTS FOR MEMBERS

The British Skin Foundation have announced detailsof the 2011 Walk for Skin. As well as the guided cityand parkland walks, to which you've becomeaccustomed, they are offering a series of walks aimedat the more adventurous..

London Walk for Skin – 22 May 2011This year's event kicks off in London on the 22ndMay with a guided walk taking in the historic sitesalong the city's famous river Thames.

Leeds Walk for Skin – 26 June 2011Leeds will once again be hosting a walk which will take place on the 26thJune in Roundhay Park, just a couple of miles from the city centre.

And for those who feel up for a challenge:

Cheddar to Glastonbury Walk for Skin – 30 July 2011On the 30th July there will be a day long walk from Cheddar to Glastonburywhere you can experience the spectacular Somerset countryside as well as thehistoric and picturesque towns of Wells and Glastonbury.

North Pennines Walk for Skin – 17 September 2011The 17th September sees the Walk for Skin heading to the North Pennines for atruly spectacular 10 mile/16 Km walk starting at the village of Dufton in theEden Valley and taking in some of the most stunning scenery in the UK.

South Downs Way Walk for Skin – 24 September 2011On the 24th of September the village of Ambereley in West Sussex takes centrestage as the start of a spectacular and challenging 9 mile walk along the SouthDowns. Along with the amazing scenery, this fully guided walk offers a taste ofthe area's varied history.

RegistrationTo take part in these events please visit the BSF website atbritishskinfoundation.org.uk and download a registration form or you can simplypick up the phone and call 020 7391 6341 and one of the BSF events team willbe happy to take your details. Please remember to nominate the Vitiligo societyas your chosen charity when you return the form. The BSF can also help you toorganise an event of your own and can even help you to stage your own Walk forSkin at a location of your choice. Just drop them an email [email protected] or call on 020 7391 6341

WALK FOR SKIN 2011

DATES FOR YOUR DIARY

Saturday 24 September 2011

Parents’ Support Group125 Kennington Road SE11 6SFstarting at 14.00 hours

Please let us know if you plan to attend

ONLINE SURVEY

Please take part in our onlineMedication and Treatment Survey.

The Society is gathering information onwhat treatments vitiligo sufferers haveundertaken and the perceived success ofeach. This information will be publishedto our members and used to inform futureresearch.

So far more than 200 people haveundertaken the online questionnaire butwe need many more to ensure that thewidest possible coverage of vitiligosufferers and their experiences.

The medications and treatments aboutwhich we ask questions are:

� steroid creams,� vitamin D analogues

(Calcipotriol/Dovonex)� Tacrolimus (Protopic)� Pimecrolimus (Elidel)� Narrowband UVB - without

Pseudocatalase� Pseudocatalase with Narrowband

UVB� skin graft� herbal or homeopathic medicines� skin depigmentation� psychological and counselling

Please undertake thissurvey by visitingour website andclicking on the linkon the right handside of the homepage. The survey isanonymous: there is

no requirement to enter your personaldetails

march 2011 final - university of nottingham · technology assessment), an independent funding body,...

Documents