[Karl Loren Note: It may, sometimes, be true that a drug is the best treatment. I start my advices with a preconception that there will always be something better than a drug. In this case my advice is similar to what it is for other so-called "hopeless diseases."
I recommend a change in diet, a detoxification of the body, and an examination of the wrong relationships in the person's life. Actual "treatments" should be done after these three senior factors are explored. I would then suggest topical and internal usage of MSM, including MSM cream, called Calm Cream and Life Glow Basic.
I believe that the above protocol will handle this situation completely.]
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We recommend
that new visitors follow through the 'About Vitiligo'
section (3 pages) that starts below and which takes a
question and answer format. This may answer many of your
queries. Other areas of this site deal with such things
as
events,
research grants,
membership
etc.
I
have this patch of really white skin. It looks like
splashes of spilt milk. My doctor says I have vitiligo
but I don’t understand what vitiligo is.
Vitiligo is quite a common skin condition which can cause extreme distress to sufferers because of its unusual appearance. It affects at least one in every hundred people in countries throughout the world including the UK. It affects people of both sexes equally, and it affects all races. It can begin at any age, though about fifty percent of people with vitiligo develop it before the age of twenty five.
You cannot catch vitiligo. It is not infectious.
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I wasn't born with vitiligo. If it's not infectious, why have these patches appeared?
No, most people are not born with it though they can develop it very early in childhood. The most probable explanation is that it is the genes which you inherit which predispose you to developing the condition. A study of identical twins, which the Society helped to fund, appears to confirm this theory.
But how can it be genetic? No one in my family has vitiligo.
That's
exactly what most people who contact the Society tell us.
The most likely reason for this is that more than one
gene is responsible for the development of vitiligo. It
is a combination of genes that may prove to be the
critical factor and it may also need some stimulus to
start it off.
Genes are inherited in a random fashion from both parents, so only sometimes will the vitiligo genes come together in the same person. Those who do not inherit a complete set of vitiligo genes are unlikely to develop the disorder. Those people who do inherit a complete set may also need some other factor to trigger the vitiligo patches to appear. In this way vitiligo genes can pass through several generations of a family without anyone actually developing vitiligo.
Why did my doctor ask about other diseases in my family?
The
association between different diseases is very complex.
Vitiligo is sometimes seen in people with other disorders
such as diabetes, thyroid conditions, pernicious anaemia
and alopecia areata, but having one disease does not give
you another one.
What can happen is that one family member may have a thyroid problem and another may have vitiligo, so don't be surprised if your doctor asks you if anyone in the family has any of these diseases. The reason for this question is that it may help your doctor to decide if your white patches are really due to vitiligo or are more likely to be due to some other condition.
But why did my doctor suggest that I should have a thyroid test?
Probably because s/he thinks it is a sensible precaution. It has been found that people with vitiligo do sometimes develop thyroid problems. It is possible to measure antibodies in people who have thyroid disease. Some doctors believe that similar antibodies may be found in people with vitiligo so it makes sense to look for these antibodies. Antibodies are created when our immune system fights a disease. Sometimes immune systems over-react and make antibodies to their own tissue (that is what is meant by the term "autoimmune"). The tendency for this over-reaction seems to run in families.
The vitiligo patches are being used by your doctor as an early warning signal to look for antibodies. Finding these antibodies does not necessarily mean that the thyroid is not working properly but it can indicate a future risk. Thyroid function tests allow a doctor to find a problem early on and to treat the disease before any other symptoms appear. In this way your vitiligo is being used to detect and prevent future health problems arising.
The important thing to bear in mind is that the general health of people with vitiligo is not affected by their vitiligo, though they do have to take extra care in the sun.
I love fresh air and I work out of doors. Do I need to take any special precautions to protect my skin?
Patches of vitiligo skin have no natural protection against the sun's rays. This is because vitiligo skin is white as the melanocytes which produce melanin (skin pigment) are not active. The effect of the sun is normally to increase melanin production and to turn the skin brown; this is a protective mechanism to prevent the skin from being damaged by burning.
Therefore, the most important reason for protecting your skin is to prevent sunburn. Not only is this painful, but damage to the skin, including sunburn, can stimulate the vitiligo to spread in some people.
As vitiligo skin is particularly vulnerable to sunlight and needs protection, some brands of sunblock are classified by the NHS (The British National Health Service) as borderline substances which means they can be obtained on prescription from your doctor.
You mention the vitiligo spreading. Do you mean that I will get more vitiligo patches or that this patch will get bigger?
Unfortunately no one can tell you what will happen in your particular case. However, we do know that some people develop one little patch of white skin which never changes its shape and no further patches develop. The majority of people with vitiligo find that they do go on to develop further patches and that these patches continue to change in size and shape.
Some people, most often children, find that some of their colour returns to some of their patches even if they do nothing about their vitiligo and receive no treatment for it.
Is there treatment for vitiligo? I was told that nothing could be done for it.
Yes, there are treatments available on the NHS. These cannot cure vitiligo but they can often slow down its progress or, in some cases, bring about complete repigmentation. If colour does return to the white patches it is still at risk of being lost again at a later stage.
Doctors can prescribe steroid creams to be used for a limited period on the affected patches. With new areas or ones which have just started to spread, this treatment can slow down the rate of spread or even restore some of the lost colour, but unfortunately it does not work for everyone.
There
is also another NHS treatment known as PUVA. This
involves taking regular medication (Psoralen) and
visiting a hospital for treatment (by Ultra Violet A
light) twice a week for a period of many months
(the illustration shows a typical PUVA cabinet).
You can obtain more information on this treatment by
contacting the office and asking for a
free leaflet.
This treatment also works well for some patients.
The book we have published called Vitiligo: Understanding the loss of skin colour gives much more information about available therapies. For example, complementary therapies cover a wide field ranging from traditional Chinese, Indian and homeopathic medicine to so called "cures" offered in advertisements by some clinics and individuals. No complementary therapy is free and some of these treatments can prove very costly indeed.
The majority of complementary therapies have not been rigorously tested in the way conventional western medicines have been. Before taking any medicine or pill you should ask what it contains, and you should let your GP know what you are taking. Many people offering complementary treatments are well qualified but, as anyone can set up as a practitioner, our advice is that you should make sure that anyone you consult is registered with a recognised professional body.
Would it help if I changed my diet?
If only it were that simple. Vitiligo has been known about for at least five thousand years and if any particular nutrient had been proved to be beneficial surely we would all have heard about it by now! If you are interested in finding out more on this subject please contact our office for a free fact sheet on Nutrition and Vitiligo.
I really can't bear the way people stare at me when I go out. Is there anything I can do to hide the patches?
Your feelings are quite normal. Many people, especially when first diagnosed with vitiligo, find the condition emotionally and psychologically devastating.
If you think that you would feel better if you were able to conceal your vitiligo, the British Red Cross run an excellent free service provided by highly trained volunteers. Its purpose is to help people to disguise their skin problems. It is called the Skin Camouflage Service and it is available to people with vitiligo by referral through their GP or their dermatologist. We can send you a leaflet giving full details about this service and can provide a phone number for you to contact your regional service provider.
The photos at the top of the page show how cosmetic camouflage can make a dramatic difference.
Some people prefer to use products which only need to be applied occasionally and do not rub off on clothing. For them fake tans (sometimes called self tanning lotions) can give a longer lasting but less perfect colour.
Unlike skin camouflage, fake tans are not usually able to provide a perfect match with your own skin colour, but they do usually last for about four to six days before they have to be reapplied. They are very useful for large areas of vitiligo. If you would like further information on fake tans, contact our office.
Unfortunately there is no fake tan that we know of available yet which gives a satisfactory tan to match dark brown or black skin. We understand that suitable products are being developed and when further details are available we will publish them in our quarterly Newsletter Dispatches which is mailed to all members of the Society.
My child has vitiligo. Should we talk about it or is it better to pretend I haven't noticed it?
We
find that children usually cope best when parents are
prepared to talk about the condition as openly and
truthfully as possible.
To pretend you haven't noticed something so obvious may make it difficult for your child to talk to you about it. Because this is often so difficult for parents to cope with, we have devoted a whole chapter of our book to the subject, including what you can do if you think your child is being bullied or teased.
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