Vitiligo Guide

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Vitiligo Guide

The purpose of this guide

If you, or someone you care about, have developed white patches on your skin and want to know what you can do about them, this guide is for you.  It was written, from first-hand experience, with the aim of bringing together into one place the information, tips and reassurance you are likely to need.

So, what is the first thing you should you do?

Discovering white patches of skin on your face or body for the first time can be frightening.  Not only that, but if these patches start to spread it can cause feelings of alarm, depression, helplessness and even – for absolutely no good reason – shame.  Exactly how you feel about these changes to your skin may depend on your background, culture, ethnicity and personality.  You may feel very distressed or you may hardly be concerned at all.  But, whatever your reaction, it makes sense to get a proper diagnosis and to find out if there is any treatment available to you to restore your normal skin colour.

Why should you see your GP?

Only a qualified doctor can give you a proper diagnosis, so a visit to your GP should be your first priority.  It’s a good idea to ask for a double appointment.  Don’t be afraid to do this – it is common practice for cases that may need a little more time than is routinely allocated to each patient and will mean that neither you nor your GP will feel under time pressure.

Another reason you should see your GP is that there several possible causes of white skin patches, including fungal and parasitic conditions.  These are generally simple to treat so it makes sense to find out if your condition is one of these and, if so, get it sorted out.  Statistically though, it is more likely that you will be told you have vitiligo.  If this is the case, you will want to ask some questions about the condition.  Be prepared for the fact that your GP may not be able to answer them all.  GPs, as their title suggests, are generalists not specialists so they will usually refer a new case of vitiligo to a skin specialist (dermatologist) for a confirmation of the diagnosis and/or further advice or treatment.  If your GP does not offer you a referral, don’t be afraid to ask for one.

Why should you also see a specialist?

Although vitiligo is not exactly rare (an estimated 0.5% – 2% of the population have it) it is less common than many other skin complaints like psoriasis, acne, eczema and allergic dermatitis and therefore GPs tend to be less familiar with the needs and concerns of vitiligo patients.  This relative lack of familiarity means that some doctors aren’t in a position to fully appreciate the psychological impact of pigment loss.  The result of this is that they may seem unsympathetic, even dismissive.  It is not uncommon for vitiligo patients to be told their condition is incurable but not life-threatening and advised not to worry about it.  It is also not unusual for family doctors to tell patients that available treatments are not very effective and may not be worth trying.   It is really important not to be discouraged if you receive this kind of reaction from your GP.  A consultant dermatologist is likely to have a much greater understanding of the psychological aspects of vitiligo, as well as the physiological ones.  They will also know what medical treatments are available to you.  It can be useful to do a bit of research yourself beforehand into available treatments (so easy nowadays, courtesy of Google) so that you can ask your dermatologist which ones are best for you and so that you will have a better grasp of what the doctor is talking about.  Don’t make yourself out to be some sort of expert though.  Most doctors take a dim view of patients who ty to tell them their business!

When you visit the dermatologist, there are several things to keep in mind.  Because the exact causes of vitiligo are still not fully understood and medical opinions can vary as regards the best ways to treat it, even a specialist can be forgiven for not having all the answers.  It is also true to say that some consultants have a great “bedside manner” and others don’t.  Remember that you are consulting a specialist for their knowledge and expert opinion, not for their warmth and personality (although it would be nice to think that you could expect both).

As with your GP, consultants are under time pressure and have to deal with a large number of cases every day, so don’t be put off if your dermatologist doesn’t seem to appreciate how your vitiligo is affecting you and what your specific concerns are.  It will be your job to explain this to them as clearly as you can.  Realise that you may need to be (politely) assertive.  Don’t let anyone dismiss your concerns or send you away feeling that you have not been listened to or given the opportunity to ask all the questions you have.  The following section may help you to achieve the outcome you want more effectively.

Preparing for your appointment

Medical appointments can be stressful and you may even feel quite emotional when talking about your condition, so it will be useful to jot down beforehand the key points and questions you want to discuss.  This will ensure you don’t “lose the plot” in the heat of the moment and it will help your doctor to zero in on your main concerns.

Of course, not everyone feels distressed by their vitiligo.  But, if you do, don’t be embarrassed about letting your doctor know.  Remember that no one can tell you how you should feel about your condition.  The way you feel is, quite simply, the way you feel – and those feelings are a symptom of your skin condition just as much as the white patches are.  If your vitiligo is causing you psychological distress, your doctor needs to be made aware of this.  That said, it is also helpful if you can remain calm enough to make sure you discuss everything in your notes.  After all, you don’t want to end up leaving the surgery thinking of all the things you wish you had said or asked.

Questions you may be asked

Your doctor may ask you the following questions.  Writing down your answers to these, as a way of preparing for your appointment, may help save time and keep the facts clear in your mind.

  • When did you first notice light patches on your skin?
  • Have you ever had this type of symptom anywhere on your skin before?
  • Do you suffer from any other skin conditions or allergies?
  • Do these patches itch or cause any other symptoms?
  • Did you suffer a sunburn, injury or skin rash before the patches appeared?
  • Is your skin particularly sensitive to sunlight?
  • Are you exposed to any harsh chemicals in your work or hobbies?
  • Have you recently changed any personal care items, washing detergents, cleaning agents?
  • What medications, vitamins and supplements are you taking, if any?
  • Does anyone else in your family have vitiligo?
  • Do you or a family member suffer from an autoimmune disease (e.g. thyroid disease, diabetes, pernicious anaemia, rheumatoid arthritis, lupus, etc.)?
  • Do you suffer from any digestive problems? (Bear in mind that western medicine has a history of scepticism as to the possibility of digestive disorders causing skin conditions but this is gradually changing and some doctors are now open to a more holistic approach.)
  • How do you feel about your pigment loss?
  • How is your condition affecting your quality of life on a daily basis?
  • How much of your time do you spend thinking about your skin condition?  Do you worry that it will get worse?  What are your main concerns in relation to your skin?

Questions you may want to ask

  • As well as preparing your answers to likely questions, it can be helpful to note down a list of questions you would like to ask your doctor.  These may include the following:
  • What is the most likely cause of my pigment loss?
  • What are the other possible causes?
  • Do I need any tests?
  • What treatments are available, which do you recommend and what are the pros and cons?
  • What side effects, if any, can I expect from treatment?
  • Are there any lifestyle or diet changes that could help?
  • Can you recommend a product to conceal the white patches?
  • Are there any information leaflets or websites you recommend I look at?

What else you can do to help yourself

Be aware that most dermatologists will restrict their advice to “textbook” protocols like phototherapy (UV light), skin sensitising drugs like psoralen or topical creams because this is as far as current mainstream medicine has progressed in the treatment of vitiligo.  If you decide to try any of these treatments you may be one of the significant percentage of vitiligo patients who do see some improvement as a result.  However, if you choose not to try any of the treatments offered by your doctor, or if you do try a treatment and it does not work for you, this does NOT mean that you will have exhausted your options.

Vitiligo is not like a broken leg: it is not a well-understood condition with a tried-and-tested medical solution.  Because of this, you may find you need to take on greater responsibility for your own recovery than you would if you had a more straightforward condition.  Many vitiligo sufferers achieve partial or even total recovery through complementary therapies, diet or other lifestyle changes.  Many also achieve a better quality of life and emotional strength by joining the support forums and organisations that exist to provide information and mutual encouragement.  Some of these are listed at the end of this guide.

10 tips to maximise your quality of life and increase your chances of recovery

Keep your attitude and expectations as positive as possible.  Having a cheerful and optimistic approach can make a big difference to your health in general, and your skin in particular, by reducing stress levels.

Pay no attention to any unhelpful attitudes you might encounter from health professionals who may lack sympathy or understanding of your needs.  Be assertive about asking for information and treatments.  Request a second – or even third – opinion if you don’t feel you are being listened to.

If anyone tells you your vitiligo will never be cured do not accept that opinion.  Whilst vitiligo is not an easy condition to treat, there are plenty of treatments that can help and many people have regained some or all of their lost pigment.  So why shouldn’t you too?

Be proactive.  If you decide to follow a treatment offered by your doctor, follow it conscientiously and give it enough time to work.  If you decide to use an alternative therapist check that they are properly qualified and, again, give the therapy time to work.  Natural therapies generally take longer, so be patient and try not to obsess over results.  (Allowing at least 3 months before expecting to see any improvement is a realistic guide.)

Take responsibility for your health.  No one else can do this for you.  Do your own research; don’t be tempted to try “guaranteed overnight cures” from the internet (if it seems too good to be true, it probably is) but be willing to try the various tried-and-tested remedies that may have proved helpful to others and give them enough time to work.

Eat a nutritious diet.  Research strongly suggests that people with vitiligo need to consume much higher levels of antioxidants than the average person, so eat more than your “five-a –day” if you can (especially leafy, green vegetables).  Taking a super-green food supplement can help with this.

Don’t let the curiosity or ignorance of others depress or embarrass you.  Decide how you want to react and then stick to your decision.  Some people decide to educate others about vitiligo when they get the chance.   Others camouflage their white patches and put the whole subject out of their mind.  It’s a matter of what works best for you.

Remember that your white patches do not define who you are.  You have a right to look however you want and to feel confident in your own skin, whatever colour it may be.

Take photos of your white patches so you can see any changes that occur and monitor the progress of any treatments you use.

Expect a cure.  Research is advancing all the time, so it WILL happen.  But don’t put your life on hold in the meantime.  Life is too precious to spend it living for tomorrow.

Bonus tip

Get support from others with vitiligo: the internet has made this so much easier to do and it can be a real tonic to talk to others who understand what you are going through.  Here are a few of the websites you can visit for support and information.

Authority sites and charities:

www.vitiligosociety.org.uk – The Vitiligo Society (UK)

www.avrf.org – The American Vitiligo Foundation

www.vitsaf.org – Vitiligo Foundation Africa

www.nhs.uk/Conditions/Vitiligo/Pages/Treatment – NHS Choices

www.patient.co.uk/health/vitiligo-leaflet – Patient Website

Forums:

www.vitiligofriends.org – Vitiligo Friends

www.vitiligoforum.com/vb – Vitiligo Forum

Blogs:

www.thevitpro.com – Personal story and blog

www.realvitiligotreatment.com/my-vitiligo-story – Personal story and blog

www.vitiligozone.com – Vitiligo blog

Alternative therapy sites:

www.nutritionist-resource.org.uk – Natural therapy resource

www.therapy-directory.org.uk – Natural therapy directory

Caroline

@vitiligoprotocl