Vitiligo Support International Inc. (VSI) is a patient driven 501(c)(3) nonprofit organization offering a comprehensive resource of vitiligo education, research and awareness for those whose lives have been affected by vitiligo.

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Frequently Asked Questions About Vitiligo (FAQ)


Welcome to Vitiligo Support International's Frequently Asked Questions page. This topical summary represents one of the most comprehensive vitiligo FAQ's available anywhere in the world. If you reached this page from a search engine, you may find it helpful to begin exploring our vitiligo community from our Home Page.

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INDEX


1. ABOUT VITILIGO AND ITS SYMPTOMS:

What is vitiligo?
What does vitiligo look like?
What is an autoimmune disorder?
What is a Melanocyte (Pigment Cell)?
What is Melanin?
What are the symptoms of vitiligo?
I have vitiligo patches on my underarms, my feet and my genitals. Is this common?
How does vitiligo develop?
Is depigmentation ever accompanied by itching?
Will the vitiligo patches spread over time? Will they get larger?
What is segmental vitiligo?
What is generalized vitiligo?
Is vitiligo at all contagious?
Where does the word "vitiligo" come from?
How do you pronounce the word "vitiligo"?


2. CAUSE AND EFFECT

What causes vitiligo?
What is oxidative stress?
Is it true that genetics may play a part in vitiligo?
What is genetic susceptibility?
Is it true that exposure to certain chemicals can cause vitiligo?
Are there things that a person with vitiligo should avoid?
Are there any other symptoms? Will Vitiligo lead to other conditions or diseases?
Are there other conditions related to vitiligo?
How is thyroid function related to vitiligo?
What is alopecia areata?
Are there treatments I should not use if I am pregnant?
If I am pregnant and have vitiligo, will my child develop vitiligo?
Am I at greater risk for skin cancer because of my vitiligo?



3. PEOPLE AND HISTORY

Who is affected by vitiligo?
How many people have vitiligo?
How long has vitiligo existed?


4. DOCTORS AND TREATMENTS

How is vitiligo diagnosed?
I was told vitiligo could not be treated. Is that correct?
I was told that vitiligo was just cosmetic. Is that right?
What treatment options are available?
How long does it take to treat vitiligo? When should I expect results?
Are there any new treatments being worked on?
What is PUVA?
What is PUVA-SOL?
What is a topical steroid cream or ointment?
What is a steroid?
What is topical psoralen therapy?
What is Narrow Band UVB?
What is Protopic Immunomodulator?
What are Elidel, Aldara and Imiquimod?
What is Pseudocatalase (Pcat)?
What is Ratokderm?
What is an Excimer Laser?
What is V-tar?
What is skin grafting?
What is autologous melanocyte transplant?
What is Melagenina?
What is Novitil/Sinvitil/Dermabest?
What is depigmentation?
How do I find a doctor that treats vitiligo?
Are there parts of the body that are harder to treat than others?
Can tanning beds (solariums) be used in place of PUVA or Narrow Band UVB?
Can genitals be treated?
Is it safe to use all treatments on the face and around the eyes?
Once a spot repigments, is it permanent? Or will I have to treat my vitiligo forever?
Why bother treating at all if permanence of repigmentation is not guaranteed?
What if my health insurance won't cover my vitiligo treatments?


5. RESEARCH

What research is being done on vitiligo?
How can I help?
Will they ever find a treatment or a cure that works well for everyone?


6. COSMETICS AND OTHER PRODUCTS

Are there cosmetics available to cover vitiligo spots?
Is it true that I can make my own safe skin-colored stain to cover the spots?
Is it safe for someone with vitiligo to use hair dyes or bleaches?
Should I use sunscreen?
What about sun-protective clothing?


7. EMOTIONAL, SOCIAL AND RELATIONSHIP ISSUES

How do I deal with the emotional issues of vitiligo?
People stare at my spots. I am embarrassed by my vitiligo. Is there anything I can do?
How do I explain vitiligo to people? Should I even bother?
I have a child with vitiligo. What should I do?
I am afraid I might lose my job because of my vitiligo. What should I do?
I'm afraid my spouse or significant other won't be attracted to me because of my vitiligo. What should I do?
I feel self-conscious and uncomfortable at places like the beach or swimming pools. What can I do?
How do I find a good counselor or psychotherapist to help me with the emotional issues?



FULL TEXT ANSWERS


1. ABOUT VITILIGO AND ITS SYMPTOMS:

What is vitiligo?
Vitiligo is a relatively common skin disorder, in which white spots or patches appear on the skin. These spots are caused by destruction or weakening of the pigment cells in those areas, resulting in the pigment being destroyed or no longer produced. Many doctors and researchers believe that vitiligo is an autoimmune-related disorder. Although researchers are not exactly sure what causes the autoimmune response, more is being learned every year. In vitiligo, only the color of the skin is affected. The texture and other skin qualities remain normal.

What does vitiligo look like?
Vitiligo appears as uneven white patches on the skin, that may vary from lighter tan to complete absence of pigment. Many people develop vitiligo bilaterally, in other words, if it appears on one elbow, it often appears on the other elbow. Researchers do not completely understand why this is. Others develop what is known as segmental vitiligo, where the patches develop in only one area or on only one side of the body.

     



What is an autoimmune disorder?
An autoimmune disorder is any of a number of conditions in which a person's immune system reacts against the body's own organs or tissues, and the person's immune system produces antibodies to them. An autoimmune disorder is NOT an "immune deficiency". In the case of vitiligo, we believe that the immune system probably sees the person's own pigment cells as foreign bodies, and attacks them, destroying them or weakening them. Other examples of autoimmune disorders include thyroid disorders, alopecia areata, lupus, and pernicious anemia.

What is a Melanocyte (Pigment Cell)? A Melanocyte is a specialized cell located in the skin, which produces melanin (pigment). Surprisingly, all humans have roughly the same number of pigment cells in their skin. Those with darker toned skin, have pigment cells that are able to store more melanin within them. In the diagram below, the cell with the tendrils, marked "I" is the melanocyte. The brown color within the cell is the melanin. The cell uses the tendrils to distribute the melanin evenly throughout the skin.



What is Melanin?
Melanin is a dark brown pigment of skin and hair in animals, particularly vertebrates, derived from the amino acid tyrosine. It is synthesized by special cells called Melanocytes, which also store the melanin.

What are the symptoms of vitiligo?
People who develop vitiligo usually first notice white patches or spots (depigmentation) on their skin. The skin remains of normal texture, though some people experience itching in areas where depigmentation is occurring. The white patches are more obvious in sun-exposed areas, including the hands, feet, arms, legs face, and lips. Other common areas for white patches to appear are the armpits and groin and around the mouth, eyes, nostrils, navel, and genitals. Vitiligo generally appears in one of three patterns. In one pattern (focal pattern), the depigmentation is limited to one or only a few areas. Some people develop depigmented patches on only one side of their bodies (segmental vitiligo). For most people who have vitiligo, depigmentation occurs on different parts of the body, in a bilateral pattern (generalized vitiligo). In addition to white patches on the skin, some people with vitiligo may experience white hair growing in on the scalp, eyelashes, eyebrows, and beard.

I have vitiligo patches on my underarms, my feet and my genitals. Is this common?
For reasons we don't really understand yet, there are certain parts of the body, which are commonly affected in those who have vitiligo. The face, underarms, hands, wrists, fingers, feet, elbows, knees and genitals are among these areas. There are many theories about why such sensitive areas of the body seem to be commonly affected - the presence of many nerve endings, the bony nature, sweat glands, etc.

How does vitiligo develop?
The course and severity of pigment loss differ with each person. In many cases, vitiligo begins in a small area. Over time, other spots may appear, while existing spots may grow larger. Some people notice that their vitiligo may stay the same for years or even decades, and then suddenly new areas of depigmentation may occur. Occasionally, vitiligo patches will repigment spontaneously, all by themselves, with no treatment whatsoever. Many people with vitiligo do notice this happening at some point in their lives.

Is depigmentation ever accompanied by itching?
Some, though not all patients, do experience itching of the skin prior to or while depigmentation is occurring.

Will the vitiligo patches spread over time? Will they get larger?
In many, but certainly not all cases, vitiligo does progress slowly over time, but there is really no way to tell whether your vitiligo will progress or not. It is a slow progressing condition however, and many patients report that they may go many years without new patches developing, and then may discover new patches appearing years later. Some people even report spots that spontaneously repigment, with no treatment at all. Use of new technologies however, may be able to arrest new spots in their development.

What is segmental vitiligo?
Some people develop vitiligo only in one or a few limited areas of their body. This is called segmental vitiligo. People with vitiligo can have a combination of segmental and generalized vitiligo.

What is generalized vitiligo?
Most people find that their vitiligo develops in a generalized way, most often with bilateral characteristics, meaning that if a vitiligo patch appears on one elbow, it often appears on the other elbow about the same time.

Is vitiligo at all contagious?
Vitiligo is NOT contagious. It is a genetic disease, caused by inheritance of multiple causal genes simultaneously, possibly in different combinations in different people, plus exposure to environmental risk factors that remain mostly unknown.


Where does the word "vitiligo" come from?
It is believed that the word "vitiligo" comes from Latin. The first part of the word, "viti" is from the Latin word "vitium" meaning a mark or blemish. The suffix, "ligo" is a common Latin ending meaning to bind or cause.

How do you pronounce the word "vitiligo"?
Many people pronounce this word incorrectly the first time they see it. But to hear it correctly, say the words "Little I Go." Then replace the first "L" with a "V" - giving you "Vittle I Go." Run the words together and you have the correct pronunciation.


2. CAUSE AND EFFECT

What causes vitiligo?
There are many theories about what causes vitiligo, and no one is positively certain. However, many doctors and researchers believe that a genetic predisposition or susceptibility to vitiligo exists in most people who develop vitiligo.

Vitiligo may result from a number of factors -- autoimmune, oxidative stress (excess of hydrogen peroxide), neurotrophic (interaction of melanocytes and the nervous system), and toxic (substances formed as a part of normal melanin production actually being toxic to melanocytes) hypotheses have been advanced. The mechanism involves progressive destruction of selected melanocytes, probably by cytotoxic T-cell lymphocytes.

Many believe that vitiligo is a type of autoimmune disorder, in which the body's immune system sees the pigment cells in the skin as foreign bodies, and attacks them. The basis for this autoimmune disorder is believed by many to be genetic. Stress, traumatic events, injury, or severe sunburns, may trigger or exacerbate vitiligo in those who are susceptible, though this has not been substantiated.

Other theories include the possibility that an abnormally functioning nervous system may produce a substance that injures melanocytes. Some believe that melanocytes in vitiligo patients may self-destruct, releasing toxic byproducts that then destroy other pigment cells. Another theory suggests that vitiligo is entirely genetic, and that there is a defect in the melanocytes that makes them more susceptible to injury.

We know that some cases of vitiligo arise from exposure to certain chemicals, for example, phenols used in photography. Surgery wounds or injuries to the skin have also been known to result in vitiligo, which can spread. The question is, are those people susceptible to vitiligo to begin with. Many experts say yes.

Finally, there are alternative theories about vitiligo that suggest diet, nutrition, and digestive disorders may play a role in the destruction of melanocytes. Some believe that internal pathogens within the digestive tract, such as yeast proliferation, might relate to vitiligo.

What is oxidative stress?
This is one theory about what may cause or contribute to the onset or exacerbation of vitiligo. Oxidative stress is an over-accumulation of hydrogen peroxide in the skin. Every person develops hydrogen peroxide in the skin, as a result of natural biological processes. An enzyme called "catalase" normally breaks down the hydrogen peroxide in the skin into water and oxygen. However, some people with vitiligo may have a problem manufacturing, using or delivering catalase to the skin.

Is it true that genetics may play a part in vitiligo?
Most experts believe that there is a genetic base to vitiligo which leads to susceptibility. In about 12% of families where a person has vitiligo, the condition is seen in another family member. Though no one else in your family may show signs of vitiligo, it is still possible that it is passed on genetically. The most likely reason for this is that more than one gene is responsible for the development of vitiligo. In fact, a combination of genes that may prove to be involved. In some cases, an independent stimulus may cause the condition to onset.


Genes are inherited in a random fashion from both parents, so only sometimes will the genes which make a person susceptible to vitiligo come together in the same person. Those who do not inherit a complete set of the abnormal 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.

Currently, researchers are studying the genetic aspects of vitiligo, using gene-sequencing computers and the mapping of the human genome to determine how genetic therapy and technology might help treat or arrest vitiligo.

What is genetic susceptibility?
This is the theory that the susceptibility or predisposition to vitiligo is genetic, and that some defect in the genetic structure, makes people more susceptible to vitiligo. While we do see vitiligo in more than one family member about 20% of the time, about 80% of patients report no other family members with vitiligo. Many experts agree that not everyone who is susceptible to vitiligo will necessarily develop it. Recent genetic studies, which ran the DNA of hundreds of people with vitiligo through gene sequencing computers, have produced important information about the enzyme operations in the bodies of those with vitiligo, which may help researchers better understand how to treat the underlying cause of vitiligo.

As with all genes, people may carry the defect that causes vitiligo, and even pass it on to their children, without ever developing vitiligo themselves. Thus other factors, including environmental and personality factors, may play a role in the onset (beginning) of vitiligo.


Is it true that exposure to certain chemicals can cause vitiligo?
Some chemicals, particularly photography chemicals such as Phenols, can trigger vitiligo in those who are susceptible. Phenols can also be found in many types of hair colorings, household stains, and similar products. There are other industrial chemicals and substances which may also trigger the onset of vitiligo.

Are there things that a person with vitiligo should avoid?
In addition to the phenol type chemicals listed in the previous paragraph, there are other things and activities which people with vitiligo should avoid. Unfortunately, the list of activities, products and chemicals to avoid varies, depending on who you talk to. Our Main Message Board has numerous topics about this subject, however, we will be updating this section shortly, with a list of some of the things many people agree may make vitiligo worse.

Are there any other symptoms? Will Vitiligo lead to other conditions or diseases?
Other than the white patches of skin, there are no other physical symptoms of vitiligo. As a secondary effect, vitiligo patches will tend to sunburn more easily, and sunscreen is often recommended. Though some websites suggest eye color and vision may be affected by vitiligo, experts indicate that any effect on eye color or the retinal pigment is extremely rare, and any impairment of vision, even rarer.

Are there other conditions related to vitiligo?
Vitiligo in of itself does not appear to "lead" to other conditions. However, there are other autoimmune-related conditions, which may arise in vitiligo patients, and that may even arise from the same genetic disorder that results in vitiligo.

Thyroid disorders (especially hypothyroidism) are quite common in those with vitiligo, and many doctors feel treating thyroid disorders is important in treating vitiligo. Other related autoimmune conditions are much rarer, but include alopecia areata, pernicious anemia, lupus, and occasionally diabetes. To worry that these other conditions will arise is unwarranted, as they are not very common. But understanding these other conditions, and knowing about their symptoms, may be wise.

Nevertheless, most people with vitiligo have no other autoimmune disorders.

How is thyroid function related to vitiligo?
Thyroid disorders are extremely common in every ethnic and racial group on the planet.

The thyroid is a small, butterfly-shaped gland just below the Adam's apple. This gland plays an important role in controlling the body's metabolism, that is, how the body functions. It does this by producing thyroid hormones (T4 and T3), chemicals that travel through the blood to every part of the body. Thyroid hormones tell the body how fast to work and use energy.

Because vitiligo may well be related to numerous functions within the body, a properly functioning thyroid (or sufficient supplemental hormone) could be important in treating vitiligo.



What is alopecia areata?
Alopecia areata is a fairly common condition (ranking with vitiligo) that results in the loss of hair on the scalp and elsewhere. It usually starts with one or more small, round, smooth patches. It occurs in males and females of all ages, but onset most often occurs in childhood. In alopecia areata, the affected hair follicles become very small, drastically slow down production, and grow no hair visible above the surface for months or years. It is not the same as male pattern baldness, which is a much more common genetic condition in males.

Current research suggests that something triggers the immune system to suppress the hair follicle. Recent research indicates that some persons have genetic markers that may increase their susceptibility to develop alopecia areata. Some believe alopecia may be one of vitiligo's closest relatives, because of the autoimmune nature of the condition. However, only a very small percentage of people with vitiligo also develop alopecia areata. Alopecia areata may result in symptoms (skin pigment loss) which appear similar to vitiligo, and some vitiligo patients are initially diagnosed with alopecia. However, proper medical examination can determine which condition is present.

Are there treatments I should not use if I am pregnant?
There are definitely some medications which will pass through the placenta to your fetus. Ultraviolet light may also pose some risk. If you are pregnant, you should definitely consult with both your dermatologist and your obstetrician regarding any risks to the various types of treatments available for vitiligo.

If I am pregnant and have vitiligo, will my child develop vitiligo?
Most people with vitiligo have no relatives with vitiligo. However, enough people with vitiligo do have parents, or siblings or children who develop vitiligo that a genetic factor does appear to exist.

Am I at greater risk for skin cancer because of my vitiligo?
While there is some disagreement in the medical community, many vitiligo experts believe there is not an increased risk for skin cancer in vitiligo patients. According to Pearl Grimes, MD, a leading medical expert on vitiligo, "the current data show no increase in skin cancer in vitiligo patients, both within the vitiligo patches, or the normal skin...either way."

Some in the medical profession believe there may be no increased risk in the case of melanomas, but that there may be a slightly elevated risk for some types of carcinomas. The medical community is still investigating this question.

Additionally, is PUVA or UVB associated with an increase in skin cancer in areas of vitiligo? Dr. Grimes says no. In psoriasis literature and articles, we do see an increase in skin cancer for those treating with UV light. But this is NOT the case for vitiligo patients. In the case of Narrow Band UVB itself, many suggest that UVB is less carcinogenic. More research and data are required, since UVB and narrow band UVB are so new. But many doctors and researchers feel that Narrow Band UVB is safer than other light options.




3. PEOPLE AND HISTORY

Who is affected by vitiligo?
About 1 percent of the world's population, (50  million people), have vitiligo. In the United States, 2 to 5 million people have the disorder. It is suspected that some countries may have higher incidents of vitiligo, for various genetic and societal reasons. Ninety-five percent of people who have vitiligo develop it before their 40th birthday, most between the ages of 10 and 30. The disorder affects all races, ethnicities and both sexes equally, which suggests that it truly is a human problem. Even on remote islands where the population is completely homogenous, we see instances of vitiligo.

People with certain autoimmune disorders do seem to be more likely to develop vitiligo, although the opposite is not true. These autoimmune disorders include hyperthyroidism (an overactive or underactive thyroid gland), adrenocortical insufficiency (the adrenal gland does not produce enough of the hormone called corticosteroid) , alopecia areata (patches of baldness), and pernicious anemia (a low level of red blood cells caused by failure of the body to absorb vitamin B12).

How many people have vitiligo?
Vitiligo is a relatively common disease, with about 1% of the world's population affected, which means over 50 million people are affected.

How long has vitiligo existed?
We believe that vitiligo has existed at least as long as the recorded history of man, and probably before that, since similar conditions are seen in many other animals. References to vitiligo patches are mentioned in the bible, and in ancient Chinese and Greek writings.


4. DOCTORS AND TREATMENTS

How is vitiligo diagnosed?
If a doctor suspects that a person has vitiligo, he or she usually begins by asking the person about his or her medical history. Important factors in a person's medical history are a family history of vitiligo; a rash, sunburn, or other skin trauma at the site of vitiligo 2 to 3 months before depigmentation started; stress or physical illness; and premature graying of the hair (before age 35). In addition, the doctor will need to know whether the patient or anyone in the patient's family has had any autoimmune disorders and whether the patient is very sensitive to the sun.

The doctor will then examine the patient to rule out other medical problems. The doctor may take a small sample (biopsy) of the affected skin. He or she may also take a blood sample to check the blood-cell count and thyroid function. The doctor may examine your skin with a special black light called a Woods Light, which illuminates areas of vitiligo. This also helps the doctor rule out other conditions. For some patients, the doctor may recommend an eye examination to check for uveitis (inflammation of part of the eye). A blood test to look for the presence of antinuclear antibodies (a type of autoantibody) may also be done. This test helps determine if the patient has any other autoimmune conditions.

I was told vitiligo could not be treated. Is that correct?
Vitiligo is difficult to treat - that much is true. But in the past few years, new treatments have been developed that are working better. And there are more options. Vitiligo can be treated, though results can take time. Even though treatment can take from 6 months up to two years or longer to see results, there are many new treatments available. Where you don't see good results with one treatment, another may work better.

I was told that vitiligo was just cosmetic. Is that right?
No. While it's true that vitiligo is not fatal, and that it has no other physical symptoms other than white patches, the emotional and social effects of vitiligo on people are well-documented.

What treatment options are available?
Today, there is more research and more treatments options available than ever before. In addition to the traditional therapies such as the PUVA system and steroid creams, new technologies have been developed, including narrow-band UVB, Pseudocatalase cream, excimer lasers, skin grafting and pigment transplantation, topical psoralens, and potentially, the use of immunomodulators.

There is no one treatment that works for everyone. Different therapies work better for different people. While one person may respond extremely well to PUVA, another may respond better to narrow band UVB or immunomodulators. For this reason, many vitiligo experts will try different therapies on a patient until they find what works best for that person.

How long does it take to treat vitiligo? When should I expect results?
Results from the treatments available vary by person. Some people will see results from treatment within 3 to 6 months. Others may not see results for 8 months. With immunomodulators, some people are reporting some repigmentation with 4 to 8 weeks. For others it is taking longer. The rule of thumb, is that you will need to allow at least 3 to 6 months before you begin to see results from ANY treatment. Additionally, you should expect to treat for up to two years or longer, in order to see good results. If you try a treatment for 3 months, and then quit because you saw no results, you did not wait long enough.

Are there any new treatments being worked on?
More research and development than ever before is being conducted about vitiligo and treating it. Even the mapping of the human genome, and the advent of gene sequencing computers, may show potential.
What is PUVA?
PUVA is one of the oldest methods used for treating vitiligo. Oral PUVA therapy is used for people with more extensive vitiligo (affecting greater than 20 percent of the body) or for people who do not respond to topical PUVA therapy. Oral psoralen is not recommended for children under 10 years of age because of an increased risk of damage to the eyes, such as cataracts. For oral PUVA therapy, the patient takes a prescribed dose of psoralen by mouth about 2 hours before exposure to artificial UVA light or sunlight. The doctor adjusts the dose of light until the skin areas being treated become pink. Treatments are usually given two or three times a week, but never 2 days in a row. The person must avoid sunlight after treatment for 12-24 hours, and must wear wrap around sunglasses to protect their eyes. The most common side effects of PUVA are sunburn, and stomach upset due to the psoralen pills. Many patients find that eating something starchy before taking psoralen pills, greatly reduces or eliminates an stomach upset.

What is PUVA-SOL?
For patients who cannot go to a PUVA facility, the doctor may prescribe psoralen to be used with natural sunlight exposure. The doctor will give the patient careful instructions on carrying out treatment at home and monitor the patient during scheduled checkups.

What is a topical steroid cream or ointment?
Steroid creams come in different strengths and include such brand names as Elocon, Clobetasol, Ultravate, Cyclocort, Descort, Pramasone, and Tridesilon. If the suffix of a drug ends in "-ate," "-one" or the word "cort" is in it, it most likely contains a steroid or steroid derivative. Other names may be used though.

Although still not completely understood, steroids may be helpful in repigmenting the skin, particularly if started early in the condition and where only a few patches or spots need to be treated. Corticosteroids are a group of drugs similar to the hormones produced by the adrenal glands (such as cortisone). Doctors often prescribe a mild topical corticosteroid cream for children under 10 years old and a stronger one for adults. Patients must apply the cream to the white patches on their skin for at least 3 months before seeing any results. It is the simplest and safest treatment but not as effective as some other treatments. Treatment must be carefully monitored, as steroids can thin and damage the skin if not carefully watched. The doctor will closely monitor the patient for side effects such as skin shrinkage and skin striae (stretch marks). Because of the side effects, steroid creams should not be used for extended periods of time.

What is a steroid?
Steroid is the Greek word for hormone. Some steroids occur naturally in the body, such as cortisol, sex hormones, bile acids. Cortisol is essential for all life. There are many kinds of steroids, Cortico, Glutico, Sex Hormones and Anabolic steroids. Anabolic steroids are illegal. When synthetic steroid hormones are prescribed and used correctly, they can be helpful, and their side-effects can be reduced. But when safeguards are ignored, damage can result.

What is topical psoralen therapy?
Topical psoralen photochemotherapy often is used for people with a small number of depigmented patches (affecting less than 20 percent of the body). It is also used for children 2 years old and older who have localized patches of vitiligo. Treatments are done in a doctor's office under artificial UVA light once or twice a week. The doctor or nurse applies a thin coat of psoralen to the patient's depigmented patches about 30 minutes before UVA light exposure. The patient is then exposed to an amount of UVA light that turns the affected area pink. The doctor usually increases the dose of UVA light slowly over many weeks. Eventually, the pink areas fade and a more normal skin color appears. Most patients wash off any topical residue after treatment. The two major potential side effects of topical psoralen therapy are severe sunburn and blistering and occasionally too much repigmentation or darkening of the treated area or the normal skin surrounding the vitiligo (hyperpigmentation). Hyperpigmentation is usually a temporary problem and eventually disappears when treatment is stopped.

What is Narrow Band UVB?
Narrow Band Ultra Violet B Light is a relatively new technology on the vitiligo front. Narrow Band UVB light panels and cabinets solve the problems of over-exposure to ultraviolet by maximizing delivery of narrow-band UVB radiation (in the 311-312 nanometer range) while minimizing exposure to superfluous UV radiation.

This narrow band allows patients to receive photo-therapy treatments with less risk of severe burning or pathogenic exposure to UV in harmful ranges. It also avoids the adverse side effects of the psoralens used in conventional PUVA therapy, since UVB treatment does not require that any medications be taken. These benefits have made Narrow Band UVB systems increasingly popular with vitiligo patients and their doctors. Even home systems are available, though home units should always be used under the care and monitoring of a physician.



What is Protopic?
Protopic (Tacrolimus) is a newer medication that has is prescribed by some dermatologists for vitiligo. Protopic, an ointment made by Fujisawa Pharmaceuticals in Japan, works to down-regulate (suppress) the immune response in an area of vitiligo. Studies have shown repigmentation success in some (but not all) people who use it. Protopic ointment is currently indicated for the treatment of moderate to severe atopic dermatitis (eczema). Currently, the approved label has no specific mention of vitiligo, and the Food and Drug Administration (FDA) regulatory requirements do not support the clinical investigation or use of Protopic in vitiligo at this time. The product is available in .03% strength and the stronger .1% strength . The risks and side effects of Protopic are not entirely known, and should be discussed with your doctor. A black box warning was added to Protopic in early 2006, warning that there had been several reported cases of lymphoma or skin cancer following its use. Some doctors dispute these findings, suggesting the numbers of cancer and lymphoma cases reported are no higher than would be seen in the general population.
Many experts believe that vitiligo is the result of the immune system improperly generating antibodies to one's own pigment cells, which then attack and kill or weaken such cells. Immunomodulators may inhibit immune cells (t-cells) from attacking the pigment cells.

What are Elidel, Aldara and Imiquimod?
Like Protopic, these products are all immunomodulators that affect immune response. Elidel is a product called Pimecrolimus, that is similar to Protopic, but comes in a cream form. The risks and side effects of Elidel, Aldara and Imiquimod are not entirely known, and should be discussed with your doctor. A black box warning was added to Elidel in early 2005, warning that there had been several reported cases of lymphoma or skin cancer following its use. Some doctors dispute these findings, suggesting the numbers of cancer and lymphoma cases reported are no higher than would be seen in the general population.

What is Pseudocatalase (Pcat)?
Pseudocatalase, also called Pcat for short, is a cream, that is applied twice a day, and purported to reduce epidermal hydrogen peroxide in vitiliginous skin, found to be in higher levels in those with vitiligo. Pseudocatalase is typically used in combination with some form of UV light therapy. Pseudocatalase does not make the skin more sensitive to light. The original formula is only available from Griefswald Germany or Bradford England.

What is Ratokderm?
Ratokderm is a laser technology for treating vitiligo, available in Milan, Italy.

Ratokderm essentially uses a laser beam of Narrow Band UVB light to target depigmented areas. The company says that this technology allows patients to completely give up the use of drugs in treating their condition, allow a point by point treatment of their vitiligo with the laser, and, avoid the more dangerous bands of UV light. This treatment is similar to the American Excimer laser.

What is an Excimer Laser?
As described above, an excimer laser is basically a highly concentrated beam of UV light, directed at vitiligo spots or patches, without affecting the pigmented skin around them. Developed by Dr. James Spencer at Mt. Sinai Hospital in New York, this treatment has the advantage of requiring no medications, and with virtually no side effects. Recently approved by the FDA, the treatment is more expensive than other methods, and often not covered by health insurance, however many dermatologists are offering excimer laser treatment in their offices.



What is V-Tar?
V-Tar is a 30% Standardized water soluble coal tar product which also contains natural anti-inflammatory agents, skin conditioners, and antioxidants. V-Tar has been used successfully in many patients with vitiligo and other hypopigmentary disorders. It will not stain the skin, and its once weekly application is convenient for many patients. V-Tar is available only with a physician's prescription.

What is skin grafting?
In an autologous (use of a person?s own tissues) skin graft, the doctor removes skin from one area of a patient's body and attaches it to another area. This type of skin grafting is sometimes used for patients with small patches of vitiligo. The doctor removes sections of the normal, pigmented skin (donor sites) and places them on the depigmented areas (recipient sites). There are several possible complications of autologous skin grafting. Infections may occur at the donor or recipient sites. The recipient and donor sites may develop scarring or an uneven appearance, or may fail to repigment at all. Treatment with grafting takes time and is costly, but does work for some people.

What is autologous melanocyte transplant?
In this procedure, the doctor takes a sample of the patient's normally pigmented skin and places it in a laboratory dish containing a special cell culture solution to grow melanocytes. When the melanocytes in the culture solution have multiplied, the doctor transplants them to the patient's depigmented skin patches. A fairly new technology, this procedure is still in the experimental stages.

What is Melagenina?
Melagenina (now Melagenina Plus) was developed in Cuba about 20 years ago, using human placenta tissue. They may now use other animal placental tissues. The company in Cuba that markets it claims high success rates, but these cannot be substantiated, and many people have claimed no results at all. The product instructions indicate that application of the cream should be several times a day, followed by 15 minutes of natural sunlight. In 1998, Melagenina Plus was announced, which unlike the previous treatment requires only once daily application and does not require exposure to the sun. The company claims that the calcium chloride contained in the product strengthens the skin?s pigmentation. The product is not available in the U.S. or Canada, and is not approved by the FDA for use on vitiligo.

What is Novitil/Sinvitil/Dermabest?
Novitil (the company is called Dermabest) is a natural topical product that some people use, which contains sources of vitamins, phytonutrients and antioxidants. Some people report that Sinvitil is helping them repigment but results are mixed. Sinvitil is a formulated gel that contains an extract of proteolipids (oils). It purports to help stimulate the pigmentation process.

What is depigmentation?
Depigmentation involves fading the rest of the skin on the body to match the already white areas. For people who have vitiligo on more than 50 percent of their body, depigmentation may be the best treatment option. Patients apply the drug monobenzylether of hydroquinone (monobenzone or Benoquin) twice a day to pigmented areas until they match the already depigmented areas. Patients must avoid direct skin-to-skin contact with other people for at least 2 hours after applying the drug. The major side effect of depigmentation therapy is inflammation (redness and swelling) of the skin. Patients may experience itching or dry skin. Depigmentation is generally permanent and cannot be reversed. In addition, a person who undergoes depigmentation will always be unusually sensitive to sunlight.
How do I find a doctor that treats vitiligo?
The best way to find a doctor who treats vitiligo, as with most professionals, is from a personal referral from a friend or family member or a respected family physician. Of course, that may be easier said that done, since you may not know anyone with vitiligo other than you. One option, is the doctor search we have created on VitiligoSupport.org, and which you can click on from the left menu bar. Of course, you may live somewhere where there are no vitiligo experts. Many of our members have found that Universities and Colleges (all over the world) which have dermatology departments, are often the best place to find doctors who can treat vitiligo. Don't be afraid to ask your doctor if his office uses specific therapies, such as Narrow Band UVB. Many of our members have found their dermatologists extremely willing to try different approaches, and excited to hear about new research.

Are there parts of the body that are harder to treat than others?
For some reason, certain parts of the body, including the hands, feet, and some areas where the hair has turned white, do seem to be harder to treat than other areas. However, many of today's brightest experts in the treatment of vitiligo, maintain that ANY vitiligo spot can be repigmented, and even hair repigmented, with enough work and dedication.

Can tanning beds (solariums) be used in place of PUVA or Narrow Band UVB?
Many experts suggest that tanning beds (also known as tanning booths and solariums) not be used in place of PUVA lamps or Narrow Band UVB lamps or even natural sunlight. The problem with tanning beds is that the lamps in these devices usually emit a much stronger, broader spectrum of UV rays, and may not be as safe or effective for people treating vitiligo, and may result in severe burning or other side effects. You should consult your dermatologist before attempting any type of light or UV therapy.

Can the genitals be treated?
Obviously a sensitive subject, but one many people with vitiligo have questions about. The reality is, a substantial number of people with vitiligo (estimated at 25 to 40 percent) do experience at least some (if not extensive) vitiligo on their genitals. For many people, this can have an effect on their own esteem, and in their social and sexual lives.

The genitalia can be treated and are in many cases responsive to treatment. Traditional therapies, such as steroid creams, and PUVA, have been used to treat the genitals, both male and female. Limited use of steroid creams has also shown results. Topical psoralen has also been used. Some doctors prescribe limited use of UV light, others have used excimer laser, pigment transplantation, and immunomodulators such as Protopic.

Is it safe to use all treatments on the face and around the eyes?
As with all ointments and creams, you want to discuss this with your doctor. The greatest risk to the eyes from vitiligo treatment is UV exposure. Prior to any treatment with UV light, it is wise to have a full Ophthalmic exam. Of course, many people keep their eyes covered with goggles while getting UV therapy. Many dermatologists will allow you to remove the goggles and keep your eyes gently shut for some period of time during each treatment. You should discuss this with your dermatologist prior to any treatment.

Once a spot repigments, is it permanent? Will I have to treat my vitiligo forever?
Right now, the products available for treating vitiligo, seem to be addressing the symptom of vitiligo (the spots), and not the underlying cause, which we still don't completely understand. Once a spot has been repigmented, some people report that the new pigment lasts a long time, and many do not report any relapse of that spot. Some patients feel that if you can get a spot to "close," meaning, to be repigmented completely to the naked eye, that it will have a better chance of staying repigmented. Still, a significant number of people report that after repigmenting, and then stopping treatment, that over time, from a few months to a decade or longer, the areas start to lose pigment again. The underlying cause of vitiligo is still not well understood. But whatever the cause, treating the spots is treating a symptom. Therefore, watching for new areas of vitiligo is important, so that you can begin treatment as soon as possible. Many dermatologists recommend various forms of maintenance of new pigment. Maintenance could include occasional light therapy treatments, or other options. This is also something important to consider. As research advances, we may one day soon be able to treat the CAUSE of our vitiligo, rather than just the symptoms.

Why bother treating at all if permanence of repigmentation is not guaranteed?
This is a common thought for those with vitiligo. Why should we attempt to treat at all, and spend the money, if the permanence of our new pigment is not guaranteed? There are several reasons. First, for many people, simply making some attempt to repigment, in of itself, is a powerful emotional tool in dealing with their vitiligo. Second, it is clear that the larger an area of vitiligo, or the more extensive vitiligo is on a person, the harder it may be, and the longer it may take to repigment. Better treatments for vitiligo are almost sure to come eventually. There is more research and investigation about vitiligo taking place now that ever before in history. Clearly, if within the next three, five or even ten years, something revolutionary is developed in the field of vitiligo, the more pigment a person has at that point, the better.

What if my health insurance won't cover my vitiligo treatments?
Many health insurance companies will initially reject treatments for vitiligo, or will approve only some, because they claim the condition is only cosmetic. Of course we know that's not true. The key with insurance companies, is to be persistent until you achieve success. Until health insurance companies universally begin accepting vitiligo as a legitimate medical condition that affects psychological and physical well-being, in addition to susceptibility to sunburn, this is how it must be done.

The first step, is to have your dermatologist write a letter to the insurance company, explaining vitiligo, explaining the psycho-social effect, and the physical risks of vitiligo, such as serious sunburn. This is often sufficient, but it will be more convincing if you follow up with a letter of your own to the health insurance approval dept. Sometimes it will take more letters, phone calls, and supporting evidence, but if you are persistent, most insurance companies, even HMO's, will eventually give in, rather than have to receive any more letters and calls from you.


5. RESEARCH

What research is being done on vitiligo?
There is probably more research being conducted today in the area of vitiligo, than ever before. From the genetic basis of autoimmune disorders, to the structure of the skin, and understanding the immune system, studies are now being conducted which may yield more information about the nature and causes of vitiligo, and how to treat it more effectively.

How can I help?
Vitiligo Support International is a global community organization committed to supporting those affected by vitiligo, raising awareness, promoting research, and discussing effective treatments until a cure is found.. You can help support our efforts with a tax deductible contribution on our
Contribution Page.

Will they ever find a treatment or a cure that works well for everyone?
Because people are different, and because there are thought to be many different causes of vitiligo, different treatments work better for different people. It is important to be willing to try new therapies if others are not working. Just because one treatment did not work for you, does not mean something else won't. As biotechnology improves, and as understanding of the human genome advances, and with ever more powerful computers to assist researchers, it seems almost certain that treatment therapies will continue to improve in convenience and effectiveness.


6. COSMETICS AND OTHER PRODUCTS

Are there cosmetics available to cover vitiligo spots?
Yes, there are many products out there to provide excellent camouflage of vitiligo spots. Some people prefer traditional waterproof makeup, designed to match every skin tone, and which can be applied to the spots only. Though they are waterproof, they are not always friction proof, and some men will not wear them. These types of covers are available in every skin tone, from very fair to dark black.

Other people prefer stains (or sunless tanners as they are often called) which are both waterproof and friction proof and which last for several days. Sunless tanner products should be applied ONLY to the white areas, as they will darken all skin relatively. Thus applying them all over a body part, may result in the spots still being visible. There is some controversy about the safety of sunless tanners, in particular those that contain the chemical Dihydroxy Acetone (DHA) which blocks UV rays from reaching the skin, and which may not be healthy for the skin environment. Nevertheless, many people use sunless tanners (at least on occasion), and find them a source of great relief.

Is it true that I can make my own safe skin-colored stain to cover the spots?
Yes! Some members of Vitiligo Support have created their own safe homemade skin stain, made entirely out of rubbing alcohol (isopropyl) and ordinary Food Coloring. By mixing the ingredients together, a brownish color results, and the tone can easily be adjusted to match your skin.

Is it safe for someone with vitiligo to use hair dyes or bleaches?
Experts recommend that if you have vitiligo, you should avoid hair colorings and bleaches. Chemicals in these products called Phenols may cause the onset or further spreading of vitiligo. Temporary hair colourings however, such as henna, which do not contain phenols or phenol derivatives, are generally accepted as safe. When in doubt, you should consult with your physician.

Should I use sunscreen?
It is always a good idea for people with vitiligo to use sunscreen, whenever they will be spending more than a few minutes in the sun. Besides the need to protect the skin from severe sunburn, sunscreen will keep non-vitiligo affected areas from tanning, thus helping you to avoid the contrast that results between tanned areas, and vitiligo spots. However, there are an increasing number of medical doctors who believe that SOME sun exposure, usually 5 to 15 minutes of sun exposure a few times a week, may be useful in healing vitiligo. If you are interested in this addition to your treatment, you should consult with your dermatologist to see if it is right for you.

What about sun-protective clothing?
Sun protective clothing can be a good addition or alternative to using sunscreens. Since sun protective clothing is an easy way to protect your skin from the sun without using chemicals such as those found in sunscreens, it is becoming more popular. This clothing is rated by a UPF (ultraviolet protection factor) rather than a SPF (sun protection factor), as it protects from both UVA and UVB rays. A garment with a UPF of 50 would block 98% of all UVA and UVB rays. Sun protective clothing can be found for men, women, and children, along with hats and sun protective swimwear.


7. EMOTIONAL, SOCIAL AND RELATIONSHIP ISSUES

How do I deal with the emotional issues of vitiligo?
The change in appearance caused by vitiligo can affect a person's emotional and psychological well-being and may create difficulty in professional and social situations. People with vitiligo can experience emotional stress, particularly if vitiligo develops on visible areas of the body, such as the face, hands, arms, feet, or on the genitals. Adolescents, who are often particularly concerned about their appearance, can be devastated by widespread vitiligo. Some people who have vitiligo feel embarrassed, ashamed, depressed, or worried about how others will react.

Several strategies can help a person cope with vitiligo. First, it is important to find a doctor who is knowledgeable about vitiligo and takes the disorder seriously. The doctor should also be a good listener and be able to provide emotional support. Patients need to let their doctor know if they are feeling depressed because doctors and other mental health professionals can help people deal with depression. Patients should also learn as much as possible about the disorder and treatment choices so that they can participate in making important decisions about medical care.

Talking with other people who have vitiligo can help a person cope. VitiligoSupport.org provides message boards and chat rooms for this very purpose, and most members here have found them an invaluable source of support. Physicians, family and friends are another important source of support.

As discussed above, many people with vitiligo have found that cosmetics that cover the white patches improve their appearance and help them feel better about themselves. A person may need to experiment with several brands of concealing cosmetics before finding the product that works best.

Finally, counseling with a licensed therapist can help you examine your fears, improve your self esteem, and find ways to deal with the emotional and social issues that everyone with vitiligo faces. This type of counseling is covered by many health insurance plans.

People stare at my spots. I am embarrassed by my vitiligo. Is there anything I can do?
First, understand that to most people, vitiligo is unusual, and perhaps a bit unsettling. Do not be afraid to tell people what it is, especially children. Kids are pretty smart these days, and everyone can understand if you explain that vitiligo is a condition in which the immune system sees the pigment cells as foreign bodies, and attacks them (our best explanation). Explain that it does not hurt, and that it is a genetic condition, and is not contagious.

Finally, try to maintain a normal lifestyle. If you enjoy hiking or sports, or swimming, then you should continue to engage in these activities (remembering sunscreen where appropriate). Don't avoid social situations and parties - these are good for your psychological well-being. In the old days, many people thought vitiligo was the result of burns or chemical spills. But people are becoming more aware about vitiligo, and it seems that almost everyone knows someone with the condition.

How do I explain vitiligo to people? Should I even bother?
We suggest that you be honest and open, and explain to people that vitiligo is a genetic condition, in which the body's immune system sees pigment cells as foreign bodies, and attacks them. Explain that it is a rather common condition, that it does not hurt or itch, and that it is not contagious. Finally, explain to them that treatment technology for the condition is improving, and that genetic advances may one day solve the condition. No matter who they are, everyone can identify with genetic ailments, such as cancer, leukemia, multiple sclerosis, Parkinson?s, and other conditions. When they realize that this is a condition just like every other miserable condition humans inherit, they are less likely to be afraid of it.

I have a child with vitiligo. What should I do?
Children usually cope best with vitiligo when their parent(s) is/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, especially as relates to other children, it is important to talk with teachers, and counselors, and to be conscious if your child is being teased or bullied. Support your child, and encourage them to get involve with activities and hobbies. Teach them that it is OK to be different, and that it doesn't make them any less important. A wonderful book for children to read, is Lori Mitchell's
Different Just Like Me which teaches children that there are many different people in the world, and that they really are very much alike, despite their obvious differences.

I am afraid I might lose my job because of my vitiligo. What should I do?
Under various laws, most Americans (and people in many other countries) are protected from discrimination in their work or from being fired based on medical conditions or illness. If you feel that you have been discriminated against because of your vitiligo, then you should consult an attorney specializing in labor and employment law.

I'm afraid my spouse or significant other won't be attracted to me because of my vitiligo. What should I do?
Relationship issues are without question one of the most important social problems that come up with vitiligo. People with vitiligo are frequently concerned that they will no longer be attractive to their significant others, partners or spouses. What we find to be the case most often, is that the partners of people with vitiligo are often times not terribly concerned about the vitiligo, and often say that it does not bother them. More often, we find that any relationship problems that arise are often created by the vitiligo-affected partner. So learn to communicate with your partner or spouse, express your concerns and fears, and LISTEN. Another possibility is to make yourself attractive in other ways. Pay attention to your hair, work out, have your teeth fixed. Skin does not always have to be the focal point.

Counseling with a licensed therapist concerning your relationship issues (either alone or with your partner or spouse) can also be invaluable here.

I feel self-conscious and uncomfortable at places like the beach or swimming pools. What can I do?
Don't avoid the beach or swimming pools just because of your vitiligo. Do not allow vitiligo to interfere with the joy of living. From a physical aspect, it may make sense to go swimming and to the beach in the later afternoons, when the sun is not as strong. If it makes you feel better, wear stain or waterproof makeup cover. And if people ask about the vitiligo, you should explain it to them just as indicated above.

How do I find a good counselor or psychotherapist to help me with the emotional issues?
Physicians and friends and family are all good sources for referral to a therapist. As with all professionals, personal referrals are often the most valuable. Second to that, you should try to find a therapist who has experience in counseling people with medical conditions or conditions which affect their appearance. These types of therapists may be able to explore with you ways to deal with vitiligo, both inwardly and socially, and can work with you to maintain your self-esteem and pride.


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