About vitiligo

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What is vitiligo?

Vitiligo is quite a common condition which makes the skin, and sometimes the hair, turn white in patches. This is because melanocytes, the cells which give the skin its colour, have been damaged.   

Vitiligo is not contagious.  If you have the condition, you cannot pass it on to someone else by touching them and it is not infectious. Vitiligo is considered to be an autoimmune condition in which the immune system attacks the body’s own tissues.

The most common form of vitiligo appears in symmetrical form (generalised vitiligo) affecting both sides of the body. In some cases only one half of the body is affected (segmental vitiligo);  this type has limited progression and is more difficult to treat. Vitiligo can spread to cover the entire body surface (universal vitiligo) but this is not usual.

The way the condition develops varies from one person to another and it is unpredictable. Some people may not notice a change in their condition for many years;  for others it can spread quite quickly.  In some cases, the white patches can regain their colour without the person having any treatment.  This is more likely with children.  However, it is very unusual for the condition to be resolved completely without treatment.

There is, at present, no 100% cure. Established treatments can be effective in re-pigmenting the skin, sometimes completely.  However, at present, there are no treatments that can prevent vitiligo developing again.  

  • Vitiligo affects at least one person in every hundred throughout the world, including in the UK. 
  • Anyone can develop the condition, whatever their skin colour or ethnic origin.   
  • Vitiligo can begin at any age but about 50% of people develop it before the age of twenty.

What causes vitiligo?

We have some idea of what is happening in vitiligo, but are less clear about what the causes are. We know that pigment cells are not functioning properly in the white patches, although some of them survive, both in the skin and in the hair follicles in the white patches.  There are a number of theories to explain the loss of pigment;  the most popular is the autoimmune theory which suggests that the body’s own immune system is attacking the pigment cells.

The causes of vitiligo are not completely understood yet, but they seem to be a mixture of genetic and environmental factors.  People with a particular combination of genes are more likely than others to develop vitiligo, but it is not only due to heredity.  The development of vitiligo may be triggered by such factors as:

  • Hormonal changes in the body, for example during adolescence.
  • Damage to the skin, for example from a cut or sunburn.
  • Extreme stress.
  • Contact with certain chemicals.  

These factors could also play an important role in the development and progression of vitiligo.

Chemicals which can trigger vitiligo

Products which contain phenol (also known as carbolic acid or phenic acid) are possible triggers for vitiligo.  These products include:

  • adhesives                                                                   
  • deodorants
  • disinfectants
  • duplicating paper
  • germicidal detergents
  • insecticides
  • latex gloves
  • paints
  • photographic chemicals
  • printing inks
  • soap antioxidants
  • synthetic oils
  • varnish and lacquer resins

The diagnoses

If you have white patches of skin, it is important to go to your doctor for a diagnosis.  The commonest type of vitiligo is symmetrical, with the patches often on the hands, on folds of skin at the armpit and groin, and around the body’s openings: mouth, eyes and genitals.  There are other conditions which can be mistaken for vitiligo, so you need a medical diagnosis to be sure.

When you see the doctor, it may be helpful to:

  • write down questions before you go.  This may help you to feel in control of the consultation and to make sure your concerns are dealt with.
  • have a trusted person with you, who can support you and help you to make sense of the information afterwards.
  • ask for information to take away with you. You may want to find out more about vitiligo before making any decisions, and
  • arrange another appointment to discuss treatment options.  Do not feel you have to commit yourself to a course of action if you are not ready to do this yet.

Vitiligo is not a physically harmful condition, so you may find that the doctor’s approach is to reassure you that having the condition is not so bad.  You may find this reassurance helpful.  However, people have different reactions to hearing that they have vitiligo.   You may feel that focusing on the physical aspect of the condition does not take account of the emotional impact vitiligo can have.  Having a changed appearance can be very distressing for many people – if this is how you feel, it is an understandable and normal reaction.

You may find it helpful to look at the “what’s next” section of this website.

What next?

To a large extent, this will depend on how you feel about having vitiligo.  Your feelings will probably be affected by where the patches are on your body, how noticeable they are, your age, family situation and so on.  It may be that your vitiligo is not very noticeable; as it does not hurt, possibly you will regard the condition as a nuisance rather than anything else.  For some people, the diagnosis can come as a shock; often people describe feeling unreal, or a sense of detachment, or time standing still.  This is a common response often associated with shock, which offers a protective barrier to otherwise painful emotions.  For many people, doing something practical can help with these feelings.

So, what can you do?

  • Inform yourself:  get information about vitiligo from this website and ask your doctor about available treatments and services.  Good information will help you to make treatment decisions and may give you a better sense of control over your condition.
  • Share experiences with others:  it can be reassuring to know that you are not alone in dealing with vitiligo.  As well as giving support, other people can also be a significant source of information. The Vitiligo Society offers opportunities for you to meet other people with the condition.
  • Reduce stress: ask yourself if there are immediate changes you can make in your life that would decrease stress (and make them, if at all possible). Ask for support from your family or friends to help you do this.
  • Talk about your feelings:  this may be with your family and friends.  If you find this difficult, a neutral person like a counsellor may be able to help.

Getting a second opinion

It is very important that you have confidence in your doctor.  If you are concerned that you have not been given sound advice, or you feel that your doctor has not listened to your concerns, you should do something about this. 

Your options are:

Go back to your doctor to discuss your concerns further.

You should do this if you feel that your doctor did not have all the information about your condition.  Perhaps you discussed more than one medical problem with him/her and not enough time was given to the particular problem that bothered you.  Possibly you forgot to tell the doctor something important – easy to do if you are anxious.  It may be helpful to write a note of everything you want to say next time, or take someone with you to remind you (and give support).  This makes it easier for the doctor to give you an opinion based on all the facts available.

Ask for a second opinion from a doctor in the same GP practice.

If your doctor has been given all the information about your condition and you are not satisfied about the response, asking for a second opinion is the best option.  A good doctor is not afraid of a second opinion, which might confirm the first diagnosis, or pick up on something that has been missed.  Doctors are human – they have to know about a very wide range of illnesses and any individual GP will have more knowledge and skills in some areas of medicine than others. 

Remember that you are registered with a Practice and not an individual doctor.  The doctors in a Practice share responsibility for their patients and will want to do the best for them, so it is reasonable to ask to another doctor there for a second opinion.  You may want to ask to speak to the Senior Partner or the Practice Manager for this opinion. 

A second opinion may confirm that your GP is absolutely right and your concern is unfounded, but it is also possible that another doctor will have a different opinion.  In this case, you will have to decide whether this second opinion is more acceptable to you (a second opinion is not necessarily going to be better than the first).

Seek advice from outside your GP practice.

If you feel that you cannot seek a second opinion from another doctor in the Practice, or you have done this and are still concerned, you can get help from your local NHS Patient Advice and Liaison Service (PALS).  Information about this service should be available on all NHS premises.  You can also find the contact details and a number to ring for your local PALS on the website www.pals.nhs.uk, or from the ‘Health Services Near You’ directory page on the NHS Choices website.  Ask to speak to the PALS Officer, who will be able to help you.

Register with another practice.

This should be a last resort, if you really feel you have lost confidence in your doctor and cannot consult anyone else in the practice.  There is no guarantee another doctor would do anything different or better, so you need to make sure that you want to take this step!